Living with Chronic Idiopathic Urticaria

If you have Chronic Idiopathic Urticaria, I doubt I have to explain what it is, or you wouldn’t be searching the internet for relief. There are links galore on symptoms and possible causes, but idiopathic means the cause is unknown and so is the cure. I don’t know my “triggers.” I don’t think there are any. 99% of all urticaria is auto-immune related and unrelated to an allergy, but I do know that Aspirin, Ibuprofen, or Naproxen is like throwing gasoline on a fire for me. Steroids are NOT a long term solution. If you’re on them, talk to your doctor and get off them ASAP. They can do more damage than they can help. I have read several articles that cite studies saying that the anxiety experienced by chronic idiopathic urticaria is similar to patients recovering from triple heart bypass surgery. I believe it. I don’t like writing about this. It’s embarrassing and extremely frustrating. Even more frustrating is trying to find relief.

I’ve read a lot of people describe their misery with this ailment but very few people talk about what helps them manage it or even overcome it. If you’re like me, your doctors help you manage it with medication and lifestyle choices. I’m not going to write about a magic cure, but I do want to let you know about what is finally stabilizing it for me after dealing with this for over a year now. NO, there’s nothing for sale. NO email list to join. This advice is FREE. NO tricks, unlike all the other sites I’ve gone through on the net. Please note: what works for me may not work for you, and of course you should consult your doctor before taking any medication.

Xyzal (levocertirizine)

I can’t imagine you’ve had chronic urticaria long without discovering Xyzal. If you haven’t already tried it, ask your doctor about it a.s.a.p. It works wonders, but it costs about $3.33/day. I’ve yet to hear of an insurance company that will cover it. They will tell you the same thing as your pharmacist, “Take Zyrtec it does the same thing.” As I told my pharmacy, “If it DID the same thing, I wouldn’t be paying $3.33/pill for Xyzal, now would I?!”

As I understand it Xyzal binds to histamine receptors better than Zyrtec and is released differently over time. I don’t really care. I just know it works. One pill in the morning. That’s it. But if you’re like me, you get tired of taking a $3.33 pill every morning after a year, so you look for other options. You’re only treating the symptoms with prescriptions. They are not a cure! My allergist jokes that “the only side-effect of Xyzal is poverty.”

You may already know that a generic version of Xyzal is not available in the United States, although it’s been sold safely in Europe and Southeast Asia for years. I recently ordered the generic, levocertirizine, from a Canadian pharmacy. Two weeks later, I can’t tell a difference, and I got a 3 month supply for $55.00. That works out to $0.55 a pill. So, I’m on the cheaper generic till I can wean myself off completely one day.

Zantac (ranitidine)

It’s an over the counter acid reducer, but it’s actually a type of anti-histamine. For whatever reason, taken together with Xyzal and Zyrtec it does help them work better. I’m down to one in the morning and sometimes a second one in the evening.

Zyrtec (cetirizine)

This stuff has worked great on my seasonal allergies for years and the generic stuff is just as good. However, taken by itself it just doesn’t work on Urticaria. I don’t care what my pharmacist says. I do take it in the evening rather than taking a second Xyzal which is expensive.

Hydroxyzine

This is the only anti-histamine I take that makes me sleepy, so I only take it at night as needed when the other meds just aren’t getting the job done. However, I haven’t taken it over three weeks now, ever since I started taking the vitamins & supplements below. That’s it for the prescription meds.

 

Google and read up on the benefits of these vitamins & supplements. I’m not going to repeat the info here. I discovered these by looking for those that reduce inflammation and boost a healthy immune system naturally. Other people have talked about the results they had by taking these and some have even gotten off their prescriptions.


Multi-vitamin.
I take a generic similar to Centrum.

Vitamin CEven though there is some Vitamin C in the multi-vitamin, it’s not enough. This boosts your immune system among a whole lot of other benefits.

Vitamin D. Again, the multi-vitamin is not enough, only 400 iu. I take an extra 1000 iu daily. I’ve seen some Vitamin D in 3000 iu. Theoretically, you can overdose on Vitamin D, so I’d stay away from the 3000 iu form unless your doctor tells you otherwise. This is great for reducing inflammation, boosting your digestive system, and whole bunch of other things.

Omega-3 Fatty Acids. I take a 1760 mg Fish Oil Omega-3 supplement twice a day. Omega-3 might be the single most important supplement than any American could take. The list of benefits is huge. Most importantly it fuels the body’s anti-inflammatory response. Omega-6 fuels the inflammatory response. Most Americans typically have 16 times too much Omega-6 in their system. You need a healthy balance of both. You can also get it from eating fish, flax seed, almonds, or walnuts. The biggest difference I’ve noticed after taking it for just a few weeks is that it has greatly improved my mood. It’s a natural anti-depressant and has also been shown in studies to deter MS and Alzheimer’s. The recommended supplement amount is 3000 mg a day.

Apple Cider Vinegar. I read about this supplement from another urticaria sufferer who swears by it. I take the tablet supplement instead of the liquid diluted with water. (If you do take the liquid, dilute it. It’s an acid and can’t ruin your teeth and burn your throat.) The tablet also has another supplements like Cayenne, Ginger Root, Iodine, etc.

So, that’s the concoction of scripts and supplements I’m on. After a few weeks, I’ve already cut out the hydroxyzine. I’m about to stop the Zyrtec. If I’m still feeling as good as I do now, I’m going to drop off the Zantac taking only the Xyzal once in the morning, until I try alternating days and eventually off all the scripts completely. Most people say it takes about 3 months of the vitamin/supplement regime to really reap the full benefits. I’ll add comments to this post later to update it.

However, the most important factor that inflames the urticaria by far without a doubt is… drumroll please… STRESS!

Stress

Stress is a difficult and dangerous cycle in dealing with chronic urticaria in particular. Stress makes it worse, but flare ups also cause a high level of stress. If you’re like me, you have to stay on top of your meds and avoid triggers, because once you break out, it’s very hard to stop it and get it back under control. There are not enough pills in the world to help Americans manage stress and no pill as effective as lifestyle changes and choices in helping to manage it naturally. Figure out what makes you tick, what stresses you, and do something about it. Do whatever works for you. Keep trying until you find it. Walk in the park, listen to music, try yoga, take a long hot bath, whatever works for you.

For me I haven’t found anything as helpful on so many levels or nearly as effective as meditation. Even before beginning the vitamin/supplement regime, during one particularly bad flare up a couple months ago, I spent almost an hour in meditation one night. I went to bed and woke up the next morning completely normal, although it was without a doubt the worst flare up I’ve had in over a year. Change the “C” in your mediCation to a “T” as in mediTation. It will make all the difference!

Please comment and share what works for you!

111 responses to this post.

  1. Posted by Wanda on October 30, 2009 at 7:43 am

    You absolutely do not have to explain – I’m here looking for relief that seems so hard to reach. I have come to a time in my life where I just don’t let things get the better of me. Chronic Urticaria is by far, the only thing that can bring me to my knees, literally. I had a bout with this 10 years ago, which lasted a year. One root canal later and it was gone. I truly believed that an undetected infection was the culprit and the dentist was my first stop this time. NOT! Allergist, Dermatologist, I DON’T KNOW what is left. 4 months into it… Well, my allergist finally told me that I can safely take 2 Xyzal in a 24 hour period and Benadryl as needed at night. My insurance does cover it but I don’t think 2 per day will fly with them. My co-pay is $60.00 for 30. And a handful of samples. Alright. Now I have minor breakouts and wake up to hives daily – but not quite as much. Xyzal specifically says “No acid reducers within a two hour period of dosage” it may lessen the effectiveness. Help. Do you take them both together? Or wait? The pharmacist surely would disagree to any of this. I cant stand it! I still wake with them and I’m afraid to eat so many things since I’m so fearful. Help.

    Reply

    • Posted by Jacinta on January 24, 2010 at 7:11 pm

      Please try 2g vitamin C powder a day. Read my post below. I have managed to stop taking all the antihistmines… It worked for me.

      Reply

  2. Wanda, your situation sounds familiar. I have never read or heard that you can’t take Xyzal and Zantac together. In fact, my allergist said that Zantac has been shown to increase the effectiveness of Xyzal alone.

    Since I posted this 25 days ago, I am doing much much better. I’m completely off night time meds: Benadryl, Zyrtec, and Hydroxyzine. I’m also off the Zantac I took morning and evening.

    All I’m taking right now is one generic Xyzal in the morning with, Centrum, Vitamin C & D, Omega-3 1760mg, and two Apple Cider Vinegar supplements. I take a second Omega-3 1760mg in the evening.

    I’ve been doing so well, I’m about to starting skipping doses to see if I can manage it with supplements alone.I read an article from a lady in the U.K. who takes this regimine of vitamins/supplements. After 3 months she was completely off meds and had no symptoms.I highly recommend you try them if nothing else is working.

    Reply

    • Posted by Wanda on November 3, 2009 at 12:57 pm

      Lyndon,

      Thanks so much for your response. I am so happy for you. Hives can test the limits of your very soul. I just started the 2 Xyzal plus Benadryl regimen about a week ago and finally have some relief. I’ll tell ya’, Benadryl can no longer get me tired, I think I’m finally getting some control. I’m even daring to eat my normal, progressively though. I didn’t think there was a generic Xyzal. I’ll look into it. As I see the hives subside, I’ll start to incorporate vitamins and hope for the best. I’m really happy to see a positive note, thank you for sharing. :)

      Reply

  3. Posted by Margo on November 21, 2009 at 11:00 am

    Thanks for sharing what works for you. I am trying your regimen, after having just returned from the Dr. for the second time this week due to a horrendous outbreak with itching that just will not stop. I am taking prednisone tablets right now because that has worked in the past to relieve swelling and get rid of the hives, and I am also incorporating your suggestions–went out last night and got vitamin D, C, Omega-3, everything you suggested except the apple cider vinegar–couldn’t find that in a tablet, so am going to try a specialty shop today. I have a whole boxfull of Xyzal samples from my allergist–I feel so lucky to have them after reading how expensive they are! Mine are 5mg tablets–is that the strength you take? The dr. also had given me Hydroxyzine to take at night for the itching, but it doesn’t seem to help with itching nor does it make me sleepy, but I will continue to try it.
    Thanks so much for posting all this great information. How are you doing now? Please give an update if you have time.

    Reply

    • I took a LOT of prednisone for a while. When my allergist found out how much my FP & dermatologist gave me, he got me off them right away. They really are not good for you long term. They really are best just to get a handle on a bad outbreak and give the antihistamines time to start working.

      Some people take the apple cider vinegar in liquid form diluted with water. I’d rather the convenience of the tablets. I highly recommend getting the generic Xyzal from a Canadian pharmacy. It has saved me so much money and work just as good as Xyzal. I’m off the Hydroxyzine completely. It never made me that sleepy either but it did help whenever I was having a bad flare up to get things under control again. If you’re not seeing a difference, I would switch to taking a generic Zyrtec at night and the Xyzal in the morning. My allergist recommended that for me to keep from taking a second expensive Xyzal at night.

      I’m doing great. No outbreaks at all since I started this vitamin/supplement regimine. (Knock on wood). I am down to one Xyzal in the morning with my vitamins/supplements. That’s it. I don’t want to get off the Xyzal completely because it helps so much with my normal allergies. I haven’t had a sinus or ear infection in over a year since I started taking it, and I have had chronic severe ear infections all my life.

      I haven’t tried to take aspirin, ibuprofen, or naproxen again. I’m not allergic to them, but since I developed urticaria they are like throwing gas on a fire for me. It’s made dealing with arthritis a bit uncomfortable without them, but the Omega-3 is supposed to enhance your body’s natural anti-inflammatory response.

      This isn’t a miracle cure. I just think if you give your body enough of the right things over time, it gets your body out of a hyper-allergic state and builds up your immune system to heal naturally. At least that’s the rationale given by the lady who shared this treatment with me. I don’t care. It’s healthy, non-toxic, and it works! What else do we need to know? Best of luck!

      Reply

  4. Posted by mary on November 26, 2009 at 8:55 am

    Hi there. I have had (mild) dermographic urticaria for over 8 months now. It started with a course of antibiotics but even when I stopped, the urticaria didnt go away. I am currently on a no-yeast no-sugar diet, but its not helping much.
    I also wondered whether there might be a link with
    my root canal treatment. I had a root canal treatment when I was a child, then had an apisectomy because of infection, and then another root canal treatment 3 years ago. My root is a bid damaged and I wondered whether I might have become allergic to the substance they use for the root canal filling?
    How can I find out, the dentists dont know anything and the Xray doesnt show any infection … I’m really frustrated :-(
    Thanks for any suggestions, or similar stories.
    Mx

    Reply

    • I’ve read about both celiac disease (allergy to glutens) and root canal issues as possible causes for urticaria. None of the symptoms of celiac disease seemed to fit me except for hives. I’ve eaten gluten foods all my life with no problem. It just seemed unlikely that it was my problem. I also wondered about tooth fillings because I have several amalgam fillings. I read that some people developed mercury poisoning as a result of their fillings, which in turn led to urticaria. Some people have had their fillings replaced and said they were cured afterwards. My fillings are not that old and most of the other symptoms just didn’t sound right.

      My allergist and most people I’ve read say that you could spend the rest of your life trying to find a cause or trigger and never find one. That’s why its called idiopathic. I’d rather spend time finding what works. If natural vitamins/supplements help build up my bodies natural anti-inflammatory response and a healthy immune system, I’m all for letting nature do its thing. Best of luck to you!

      Reply

  5. Posted by Stina on December 4, 2009 at 3:24 pm

    Hi!
    Just want to say thank you for posting this info – I’ve heard in other places that theses vitamins should be beneficial and will start taking them tonight! I have had urticaria in my face, around my eyes and on my neck for about a year and a half, and it is truly depressing and ruining my life to some extent. It is kind of comforting in a way to hear that there are others out there with this weird problem!

    Just want to say also that meditation works for me too! It is as if it calms down a system that is in hyper mood….
    I will also post any changes I might see after having taking the vitamins. it would also be great to hear more stories about people trying this or something else that work for them.
    Best of luck to all of you!

    Reply

  6. Well, I had a headache and thought I would take an aspirin just to see if I was done with this. Being cautious I only took one. Later that night I could tell symptoms coming on and started taking meds. The next day wasn’t too bad but took a second dose of anithistamines that night. Today, day 2, I’m breaking out again. So it appears I had it under control with 1 Xyzal a day and supplments only but sort of a fine wire balancing act I suppose. Now I know. I just won’t take aspirin and stick with my vitamins. Proving that it may be something we live with but never really cure.

    Reply

  7. Posted by Cristy on December 26, 2009 at 11:43 pm

    Hi,
    I have been suffering from a rash since Sept or Oct that my allergist now has told me she thinks is Urticaria. It gets on my back, chest, shoulders, neck, & face. So frustrating! None of these dr’s no what or why. I have been to my primary care dr, dermatologist where she did a full blood work up and punch biospy, and now being treated by an allergist. I have been on prednisone (temp works), antiinflammatories, clarinex, and now Hydroxyzine 3-4 daily which makes me extremely sleepy. It comes right back as soon as the steroids are finished. I am all for trying the vitamins/supplements! My question is the Urticaria is pustule like in some areas and pictures I have seen all look like just hives….is any one else’s small pustule like? My allergiest tells me there are two types…but she doesn’t really know what I have or am even allergic too…???

    Reply

  8. Christy, I’m not familiar with a pustule form of Urticaria. I would switch the Clarinex for Zyrtec immediately. Clarinex hasn’t been shown to have much effect on urticaria. Zyrtec works well for some people. It helps me, but doesn’t work as well as Xyzal, a different form of Zyrtec. You should try the Zyrtec OTC and ask your doctor to put you on Xyzal, one a day in the morning. I took a Zyrtec in the evening as needed, and 2 Hydroxyzine at night before bed only if needed. Xyzal & Zyrtec are non-drowsy. Being on that many steroids for long periods of time is not good at all. You should get off them as soon as possible. I couldn’t imagine not taking them at first either, because they were the only thing that worked until I found Xyzal. You really shouldn’t stress yourself out more by trying to find an allergic trigger. You probably never will. If your urticaria is autoimmune related like most of us, your body is allergic to itself. There are other things that just make it worse and inflame the problem like heat or stress. One other thing, anti-inflammatories like Ibuprofen (Advil) or Naproxen (Aleve) make my uritcaria flare up severely, although I’ve taken both all my life until now. You may try getting off them for a couple weeks too to see what difference it makes. Best of luck to you! I’m no doctor but this is what’s working for me. Ask your doctor or find another one.

    Reply

  9. Posted by Rex on January 23, 2010 at 3:03 pm

    I’ve been experiencing the same symptoms, frustrations, and symptomatic solutions for over 10 years. I recently changed from Zyrtec to Xyzal and immediately noticed a signficant decrease in symptoms. I’m interested in more information about drug interactions between Zyrtec/Xyzal and anti-inflammatories. Namely, does taking an anti-inflammatory reduce the effectiveness of Zyrtec and/or Xyzal? I notice that when I take Motrin and Zyrtec my urticaria remains a problem. Not so with Xyzal. Years ago I recall a note in the documentation included with Zyrtec that warned of this decrease in effectiveness when taken with anti-inflammatories, but I’ve been unable to find it recently (online or otherwise). Have you been able to find an official documentation on this interaction?

    Thanks
    Rex

    Reply

    • Sorry, I haven’t heard of an interaction between anti-inflammatories and Zyrtec or Xyzal. In my case anti-inflammatories like Ibuprofen, Naproxen, or even Aspirin cause a reaction in me. They aren’t necessarily a trigger for me, but my allergist says its like throwing gasoline on a fire that make the symptoms much worse. I’ve taken them all my life with no side effects but have resolved to live without them. Natural anti-flammatories like Omega-3 have been helpful instead. Best of luck, Rex.

      Reply

  10. Posted by Jacinta on January 24, 2010 at 7:05 pm

    I have been suffering from chronic hives for 2 years now. It was triggered by serious sunburn to my whole body. No antihistamines completely stopped it and I became immune to them after a while anyway. And I was taking double the recommended daily dose! Well, after doing my own research, I decided to try to vitamin C powder in high doses. I will try anything because I am desperate, and it actually works!!

    Anyone with hives should DEFINITELY try this… please. And then can you let me know if you have any success with it. You have nothing to lose and it must be much better for you than taking all those tablets. We need to spread the word too because more research needs to be done on this :) Mine was quite a severe case. I really feel for anyone suffering from this because it is very very frustrating and annoying explaining it to people. Good luck everyone.

    Reply

  11. Posted by Alok on January 25, 2010 at 8:36 pm

    Thanks of posting this – i have CIU for almost two years now and its pretty frustrating – i have to keep carrying a couple of zyrtec / levo tablets with me for emergency.

    But one thing i have noticed is that when i am mentally stressed, it seems to increase a lot – and decreases when i am relaxed. Plus the condition of my stomach also affects it.

    So to all the CIU patients out there – dont worry, as long as you keep two zyrtecs in your wallet all the time, you are managing it well !

    Reply

  12. Posted by Mary on January 31, 2010 at 8:46 pm

    PLEASE READ THIS – I THINK I HAVE CURED MY CHRONIC IDEOPATHIC URTICARIA
    I used to eat sweets everday – cookies, chocolate, cake, etc. Doctors told me to live on Zyrtec, which works great, but I want a cure, not something to cover the symptoms. I happened upon an article about things in our diets causing inflammation. DUH!@#$ So I started an “anti-inflammatory diet.” Look it up. After one week, I really think it is almost gone. Pacific salmon (not farm raised), oatmeal, almonds, flaxseed, walnuts, berries, sweet potatoes, green tea, and 4-8 glasses of water a day. My diet did not consist of just these items, but I ate a serving of at least 2 of these a day. What a difference! Look it up – I hope it helps.

    Reply

  13. Posted by Helen on February 5, 2010 at 8:40 am

    My Chronic urticaria started as a reaction to the drug Effexor. That was in August 2009. I still have hives every day all over my body, except my face. I suffer also from psoriasis since 2007, brought on by a period of intense stress. I’m an itchy mess. I’ve been to my primary care physician, an allergist, and a dermatologist. I’m taking Zyrtec, Claritin, and Hydroxizine with very minor relief. It’s worst at night. I’m so depressed and stressed over this that I’m making it worse. I’ve done 5 sessions of acupuncture, weekly Kundalini yoga, and am taking a Chinese herb blend called Derma Wind Release by Kan. NOTHING IS HELPING. I have an appointment in March with an immunologist who had “chronic hives” in her services description. My mental state is pretty bad because I’ve always been an attractive woman, placing too much emphasis on my looks for my well being, and now that my skin is so unsightly I cry every day. This is taking a huge toll on myself and my family.

    Reply

  14. Posted by Stina on February 6, 2010 at 2:59 am

    Hi Helen, Just wanted to give my sympathy, and telling you that you’re not alone – I used to work as a fashion model before all this happened to me, and now I have had two years of cronic urticaria in my face, neck and now also sometimes on my body – I know it is terrible, and devastating for oneself and the people around you.
    Before this i used to do yoga every day for about an hour every morning, including meditation, and in that period my skin was glowing, then I experienced a period of intense stress, got out of the yoga habit and manifested this condition. It really is negative spiral, since it makes you feel so bad and depressed which in turn makes it worse.
    I don’t know if this is helpful in any way – but I just wanted to tell you how I can relate to your experience. Maybe it takes a long time of relaxation and getting back into a harmonious state in order to really clear it out, I don’t know but that’s what I feel like I need anyway.
    It would be interesting to hear how it goes with the immunologist.
    Best of luck to you!

    Reply

  15. Found this article by Dr. Andrew Weil very informative about why he’s raising the recommended Vitamin D daily intake to 2,000 iu. He specifically cites auto-immune disease and psoriasis as ailments that could benefit from the increase.

    http://www.huffingtonpost.com/andrew-weil-md/new-recommendation-why-yo_b_446580.html

    Reply

    • Posted by Helen on March 19, 2010 at 7:26 am

      Be careful taking Vitamin D. I tried taking 2000 iu’s for two weeks in a row, and my hives exploded. Bad for me. Also, Jacinta’s recommendation of vitamin C will only work for some people. My hives were terrible when I tried to supplement with extra vitamin C. The reason I tried to supplement with these vitamins is because I also suffer from psoriasis, and they were supposed to be good for that.

      Reply

  16. I have had CIU for 5 years, just basically woke up with it on Vanlentine’s day 2005. I am a nurse, and have come to discover, after ICU admissions myself for angioedema, that the only thing predictable about the illness is the unpredictability of it. like many of you, Ibuprofen, ASA and Naproxen causes instant angioedema of my esophagus, face, ears and trachea. I have been using Claritin and Zantac to control most of my symptoms, with Hydroxizine for severe itching. I have not tried the other med recommended. for the daily local hives, application of cold and topical steroids cream seems to help some. if anyone has any other recommendations, I am always looking! A

    Reply

  17. Posted by Hilary on March 14, 2010 at 2:28 pm

    Boy do i know what your going through! I am 23 and i have had this for the last 6 months. at first it was horrible. no one knew what was wrong with me. after several unsuccessful tests (and lots of money later) i decided to go to a dermatoligist. she gave me xyzal and it was a miracle. i still would get occassionally itchy, but it was more of a “normal” itch…not constant itching till i would bleed and look like a monster out of a horror movie. of course, i contracted this problem 2 weeks before my health insurance through my college was about to run up. this meant i faced a possible pre-existing condition. when i finally did get health insurance, sure enough, they won’t cover anything that has to do with allergies or my skin problems. so instead of paying $100 a month for xyzal i switched to OTC Zyrtec. i admit it is not as good as xyzal, but i use it now with a combo of multi vitamin, omega 3 fish oil supplements and tanning! yes i know indoor tanning is not good for you either, but i am desperate. with this combo my skin has been doing great and i am saving a lot of money. if tanning is something that might scare some of you, the bright side is that research shows tanning can reduce the risk of breast cancer. they way i see it, i could get hit by a bus tomorrow and what would it matter then? if it gives you relief then why not. hope this helps readers! i hope everyone’s rash problems go away because they are a pain!

    Reply

    • Posted by Helen on March 19, 2010 at 7:18 am

      Well, I went to the immunologist. Dr. Michelle Conroy at UMass. She was by far the most helpful, but I’m still in misery. I’m taking 2 Zyrtec a day, 2 150mg Zantac a day, and Benadryl as needed. Nothing is touching the itching except yoga. When I’m doing yoga, I’m comfortable. I would like to try tanning, as the sun has been out for a few days and the parts of my skin exposed to the sun are more comfortable than those not exposed. I feel like Hilary about the tanning at this point. I’m not enjoying my life at all right now, so why not take the risk to feel better? Does anyone have any tips for dressing in the summer so as not to look like a freak with scars all over? How about living through a pool party or a beach vacation?

      Wishing everyone relief….

      Reply

  18. Posted by Anna on March 26, 2010 at 8:42 am

    Hello! It’s nice to see other people are out there living with this as well. I am 22 and just crossed the six-week mark yesterday, so I’m feeling quite discouraged knowing that this problem is going to ruin what should be the most attractive years of my life. My issue is that I have tried EVERY antihistamine, including Xyzol and Zyrtec, including Zantac and another H2 blocker called Axid, including Hydroxezine, Benedryl, Claritin and Clarinex, and I got NO relief from any of them. Topicals are totally useless. I’m now taking Periactin (Cyproheptadine) which helps if I take four times the standard dosage, but the possible side effects can be catastrophic, so it requires very close monitering (beware, this one stimulates the appetite…I’ve gained five pounds in 4 weeks). I wish I could be on steroids all the time, but obviously we all know that’s impossible. If nothing else, I find that really rigorous cardiovascular activity makes the wheals fade a bit faster, but sports bras are bad news for those of us with dermatagraphia. Help? Anyone?

    Reply

  19. Posted by Charlene Robinson on April 4, 2010 at 8:18 pm

    I was officially diagnosed with chronic hives April 2009 after being misdiagnosed with the coxsackie virus. Now one year later I have figured out a few interesting facts about my condition no thanks to any of the many doctors I have seen over the past year. One interesting fact is that if I take antihistamines like Allegra, Claritin then I will break out in hives worse than if I take nothing. If I make the mistake of taking an antihistamine and ibuprofen(which the doctors did tell me not to take) then I will definitely have a bad day. If I get heartburn and make the mistake of taking something like Pepcid then I will have a bad outbreak of hives. I never had heartburn until all this started. After loading up on antihistamines last year per all the doctors I saw it is no wonder I felt so bad. I went off all the anithistamines to take an allergy test to see if any foods were causing my hives and that is when I realized my hives got considerably better. Now, I take an occasional Benadryl if I have any issues. I am not sure if I react badly to Benadryl but it lets me sleep pretty good if I am having any allergy issues. Anyway, if anyone out there has had similar issues with antihistamines please let me know. I still do not know why I still have issues with hives but at least I know some of the things that will definitely make them worse.

    Reply

    • Posted by Jacinta on August 20, 2010 at 9:00 am

      Interesting that you never had heartburn until you got hives because thats the same with me! maybe it causes inflammation on the inside of our bodies as well. i went and had a gastroscopy because the pain in the stomach was so bad and they said everything was normal.

      Reply

  20. Posted by Bill on April 26, 2010 at 9:38 am

    Hi,

    I’m 22 and have been dealing with chronic urticaria for 2 years now. I have found 3 things that normally work for me: One is a daily Zyrtec; if nothing else, it puts my mind at ease, and I can relax throughout the day. Number two is a healthy diet. I have found that when I eat too much sweets/fast food/pizza and drink too many sugary colas, even diet colas, I will tend to break out. Lastly I try to take a good amount of Vitamin C each day.

    When I combine all these things I tend to go about 6 months at a time WITHOUT ANY HIVES. But that’s the longest I’ve been able to hold it in remission. The funny thing is that I always seem to break out in October and April. It’s Psychosomatic for sure. I too sympathize with every one of you, this is a frustrating disease that makes me want to stay inside. And God forbid I have to explain it to people…

    Reply

  21. Posted by Beth on May 6, 2010 at 11:43 am

    I was really interested to find this string. Over the last 25 years, I’ve had two prolonged bouts of chronic ideopathic urticaria – the first in 1985 lasted 2 years, the second in 1999 lasted 18 months. Double doses of Zyrtec seemed to help me the most (this was pre-Xyzal). My question is this: Is there any evidence that there is a cycle to this? Having gone 14 years between my first two bouts, am I more likely to have another in 2013? I’m so happy to be hive-free now, I hope they don’t recur. But I do wonder what will set off the next bout and when…

    Reply

  22. [...] This blog post was very helpful. It was the first thing I found that said, “Hey, vitamins can help.” Other blog posts I came across like this one had interesting comment threads – it was so nice to learn I was not alone. [...]

    Reply

  23. Posted by Erin on June 17, 2010 at 12:46 pm

    I am looking for answers for my daughter who is 4 1/2. She has had CIU for almost 2 years. I was told that hopefully she will grow out of it but as we approach the 2 year mark I’m feeling doubtful. As she is getting older I can tell that the “spots” are bothering her. She will wear pants with dresses and cover herself up when they are bad, which acutally make them worse because when she gets hot they are worse and spred. When she is home she wears usually just underware and hates to be hot, I’m guessing it is because being hot bothers her skin? She is currently on zyrtec or clartin, 1/2 tsp in the am, 1/2 tsp in the pm. We discovered that by splitting the dose it covers her for the day. I am concerned because she is getting double the dose she should be getting but when I would give her less she would have break through hives. Once in a while every couple of months she has a week where she also needs to take benedryol which helps, but makes her tired and cracky. I would love to hear from folks with it as to what makes their skin feel better when they are having a breakout because I tried many things but I am unsure if they are working for her or making it worse. I’ve noticed when she is having a break out keeping her cool helps but any other advice? I know stress and illness can bring it on too. She had the worse break out after I had her sister. It make me feel so bad to know she was stressed so much to cause a reacation. We had to put her on steriods to control it. We have done a blood test to test for allergies but can’t do a skin test because she can’t be off the medication long enough, within 48 hours she is head to toe hives. Thanks for any ideas!

    Reply

  24. Posted by Chris Pollard on July 8, 2010 at 6:05 am

    Hello,
    Im 46 yrs old,male,and live in the UK.I have been diagnosed with chronic physical urticaria.In the last year Ive been admitted to hospital on two occassions,both for a week,with cellulitis.My immune system got so low that it was inevitable that I would catch an infection sooner or later through a break in the skin.I was put on to IV antibiotics and each time when I came out I felt great,in fact Ive only been out four days.While I was in hospital I kept on having attacks of urticaria,on my scalp,backside and legs.Pressure on any part of my body and stress are prominant factors for me it seems.For over 25yrs I worked as a linesman,erecting and wiring electricity pylons and poles,I was very fit and very strong,full of confidence in my own abilities.Now,I have nt worked for a year and a half,am reduced to incapacity benefit,have no strength,or confidence and have no idea what the future will hold.All I know is that for no known reason my body is attacking itself,there is no real cure and no one knows if it will ever stop.I have seen all manor of specialists and took all manor of medication and still the urticaria attacks occur,every day,especially where/if pressure has been applied on my body.
    I cannot accept that it is “just something that happens to some people”,as I have been told before.There is a reason for everything.I think if this illness was taken more seriously and more money was pumped into the research a link could be found and therefore a more direct cure could also be found.
    I feel for every single sufferer out there and as bad as it sounds its good to know Im not alone.Don,t ever give up wondering how or why or asking questions.Dont ever give up hope…………CP

    Reply

    • Posted by Jacinta on September 7, 2010 at 6:28 pm

      I agree that there must be a reason…I think there is just not enough people suffering so they dont bother doing the research. I believe its up to us as the sufferers to do our own research and continue to have posts like these to try and figuire out how to help ourselves…

      Reply

  25. Posted by Julie on July 28, 2010 at 5:27 pm

    I just discovered that I have Chronic Idiopathic Urticaria after 6 years of baffling symptoms that made me think I was crazy. I get them internally also. During my first attack, I could not wear clothing or even pick up a cup because my hands would swell. It was so painful I was admitted to the hopital in 1997 because I went to the doctor with intense internal pain. He said he thought my organs were shutting down and admitted me to the hospital. A CAT scan showed what they thought were cysts on my liver and elsewhere. They were internal hives. I have been to the emergency room in excruciating pain 4 times this past winter because of attacks with hives and in my esophagus and was all raw inside and it hurt to eat for weeks. I was under severe stress so it made me flare up. I got married last September and then went through the death of my father and other family members, lost my restaurant, my home, etc. I became unable to work, had to go to a psychiatrist, doctors and lots of sedatives and anti depressants were prescribed. I was told I was having panic attacks. I thought I was competely crazy. I had to quit working. This all took a heavy toll. My husband is gone from my life and I am now living on my own with my sons and working from my computer at home. This has placed serious limitations on my life and I am going to take yoga classes, stay quiet and calm, and control my entire enviroment carefully to try and regain my health. If feels better to have gotten this diagnosis from an allergist after so long and reading about it helps me understand that I am not crazy. I agree this is hard to explain to other folks. At least my family knows now and are very supportive.

    Reply

  26. Posted by Renee on August 4, 2010 at 12:59 am

    Thank you so much for your comments everyone! It does me so much good to know that I’m not suffering alone. I have CIU and angioedema. I have had this for 6 years now I have been to 8 different doctors. They all want me to take medicine. When I first got diagnosed the first doctor had me on steroids for a year and a half and I now have the beginning stages of glaucoma and I’m 30! I have tried all the drugs and I couldn’t function. I was too sleepy all the time and the steroids gave me the worst mood swings. I’ve had to come up with things that work for me. I can’t take the advil or asprin either. I take 2 Zyrtek a day and when I start to become immune I take the generic and switch back and forth. When I’m in a really bad state I use Eucerne Lotion (the calming creme and the calming creme anti-itch lotion) I also use the cortizone 10 easy relief roll-on stick. I also drink Xango it’s a mangosteen drink which is supposed to help with inflamation. When I have really bad flare-ups I have to have an eppi-pen around too because the have gone in my throat before. My face swells really bad too especially my lips they hurt the worst. What I really hate is how unsympathetic everyone is. The doctors especially. They always say to me it’s just itching. Yeah itching for years on end that makes me wanna kill myself! Does anyone else get that and also all the advice on what to do and what I’m allergic too? Nobody ever believes me when I say I’m not allergic to anything. And the zyrtek bottle say don’t exceed more than 1 a day well I take two and that worries me about what effect it will have on my health which leads to stress which leads to flare ups! One just doesn’t do it for me anymore. I’m excited to try the vitamins and see if they work for me any sugesstions on brands? Thanks.

    Reply

    • Posted by Erin on August 20, 2010 at 1:08 pm

      I hear you on the unsympathetic thing. I know my daughter allergist said well it is JUST hives. I should of said yeah all over her body that drive her crazy with itching all the time. I mean yes I know it does not threaten her life but to see her so uncomfortable and with me with no way to help except give her medication it bothers me. I also worry about the amount she takes but I have been told she “should” be ok, which does not make me feel good.

      Reply

  27. Posted by Helen on August 24, 2010 at 6:16 pm

    I have to tell you all about a little miracle that I found out about. It’s called l-Lysine, it’s available in health food stores and online. It’s an amino acid that takes the itch away!!!
    My cousin mentioned that it helped her when she broke out from the sun in a rash, so I tried it, and it really brought me a lot of relief from the itching. I take 4 a day, spread out throughout the day.
    So this is what I take now: 2 Zyrtec or Claritin (one am & one pm), 2 Zantac (ranitidine, one midmorning, one before bed) and with each of those pills I take one l-Lysine. My itching has been well-controlled for about 4 months now.
    I urge you to try it!!!

    Reply

    • Posted by Helen on August 24, 2010 at 6:21 pm

      Oh, I wanted to add one more thing: after I shower, I wipe witch hazel all over my body with a cotton ball or two to “tone” my body skin and keep it cooler and cleaner. Then I use a combination of two creams: Eucerin Anti-Itch lotion with the menthol in it, and MetaCare gluten free lotion. They keep my skin cooler.
      Also, I have gone completely gluten-free, citrus-free, and alcohol-free. Although those food items do not show up on my allergy tests, I get hives every time I eat them.
      Hope these tips help!!!

      Reply

  28. Posted by Karie on August 27, 2010 at 7:14 pm

    This blog has been so informative and helpful in learning more about CIU treatments. I was diagnosed with CIU 12 years ago after much suffering and many tests and treatments – including slathering my entire body in some potion in case the problem was scabies!! And to think it all started with two small itchy bumps on my shin I thought were bug bites. When I think back to childhood, I remember periodically having itchy elbows with little bumps on them. Must have been the beginning of “the fun.” I’m pretty sure my outbreaks are caused by stress, although I don’t feel outwardly stressed. Just seems that the outbreaks occur sometime following a hectic period in my life. I will definitely try some of the suggestions you all made, such as Zyrtec, Vitamin C and fish oil. Thanks for sharing your stories, and wishing us all and itch-free future!

    Reply

  29. Posted by Shannon on September 7, 2010 at 4:53 am

    My sympathies to you all out there! I had my first round of CIU in 2005. It lasted about 5 months and went away. At that time I took zyrtec, singulair and a couple of doses of prednisone. As quickly as it came, it went away.

    In April 2009 I had my gallbladder removed. I was stressed for 2 months prior because they couldn’t find a cause of my sickness until they realized my gallbladder was emptying bile into my stomach. After my surgery, my life changed forever.

    I have been on prednisone since April 2009. I have also tried every antihistamine out there. Xyzal, Claritin, Allegra, Zyrtec, Benadryl, Hydroxyzine, Singulair and many, many others. My daily regimen now is 20mg of prednisone, 20 mg claritin, 50mg benadryl, 300 mg zantac and 40 mg of protonix. We are trying very slowly to wean me off of the prednisone. My life is completely changed. Every single day of my life I am fighting these hives/angioedema. I have been to the Emergency room over 40 times since April of last year. My medical expenses are over 39K and that’s just MY portion after the insurance. I have gained 56 pounds on the steriods, I’m mentally depressed and I am simply existing instead of living.

    For those that know nothing about this disease in and out of the medical field, we “just” have hives. I’ve been told to use itch cream by friends… I’ve been told I’m a hypochondriac…and I’m frustrated that there is not more medical research or help for this horrid disease. I’ve been to the ER and been told by a few ER doctors that it’s just hives. Some ER doctors have admitted me. Some have no clue how to treat me. I’ve been to the Mayo Clinic and spent over 20K in Rochester, Minnesota to the Chief of Allergic Diseases and he says the same thing. There is no cause… there is no cure..

    How do we live like this? My last resort is to reach out to those suffering and to group together and start a foundation/forum to get this disease out there. Demand more research. Demand we be taken seriously. I told one doctor recently that I wished she had to live just ONE WEEK like I’ve lived for the last 1 1/2 years… then she would have more sympathy for what we endure!

    I’m going to try the vitamin regimin you have all suggested. I’ve tried everything else there is to try. I do know that stress is a MAJOR enducer for any kind of CIU.. pressure, cold, hot, vasculitis, etc. A positive attitude is a MUST although as with myself, it’s very hard to be positive when you’re covered in hives/angioedema every single day of your life.

    Thank you all for your comments and for sharing your stories. I know I’m not alone out here with this horrid diesase and it’s refreshing to find others who are willing to share so we all may being to heal.

    My very best to all of you!!

    Shannon

    Reply

    • Posted by Lisa on November 22, 2013 at 10:32 am

      Check into XOLAIR !!!! Expected to be approved by the FDA very soon – with very promising results from clinic trials for Chronic urticaria.

      Reply

  30. Posted by Stina on September 8, 2010 at 12:43 am

    Hi!
    I have had urticaria in my face and on my neck for a total of about two years now. Reading all your stories is really interesting, and it seems like a lot of you take quite a bit of medication for this. I don’t. I live in Sweden and when I went to a doctor they didn’t even mention urticaria, but just said it was regular eczema (I had that as a child), and that it usually comes on in the face as an adult, and that there is nothing you can do about it but put on cortisone cream (for me it just gets worse with cream though)…. I know that what I have is urticaria after what I have read about this, having seen pictures etc.

    I have read quite a lot about this and also experimented myself with different kinds of treatments (vitamins, acupuncture, homeopathy etc…) without any results. I tried acupuncture with a really renowned acupuncturist in Stockholm who has helped many many people with severe allergies, but it got worse and worse after each treatment. It isn’t uncommon to get an initial worsening of symptoms after treatment, but this just went on and on so I had to stop.

    I am really interested in the role that psychological factors and general and emotional stress play in chronic urticaria. The disease is a mystery, but as for myself, I feel that it has to do with profound stress in my life. Just interested to hear if any of you have similar experiences. Maybe the causes are different for different people, but I am very curious to hear your stories to see if there is some kind of pattern for the onset of the disease. If so, perhaps the “treatment” is not so much to find with medication, but in stress management techniques, psychology etc.

    The following supports my beliefs: I have had this since August 2008 and it came on in a period of huge emotional stress in my private and professional life. Then this summer I had three months off, and I spent summer at our summer house with my children and family. No stress, no worries, no pressure from anyone. And – the urticaria went away completely. I was NOT living particularly healthy – we had a glass of wine almost every day (sumer time!), had ice cream, I din’t take any supplements etc. etc. Pretty interesting I think.

    I then went back home, did a huge move with my family, new job in a school with wild children (lots of stress), new school for my own kids etc. and the hives have now returned pretty bad. I am soooooooo devastated of course, because it means that I start to withdraw from social interactions, and have a really hard time at work, get irritated with my children etc.

    I would like to share this story because I am interested to hear if any one else can relate to this, or have similar stories. Like I said – it would be great to just get some feed back on the role of stress in your lives in order to understand urticaria better.
    Thanks for reading!

    Reply

  31. I’ve had diagnosed CIU for 10 years. I was diagnosed at 12 and I am now 21. I remember being in so much pain from the hives once that I told my brother if he didn’t give me the benedryl, I’d rip the skin off his ears! (I was off antihistimines prior to the allergy test).

    I was put on 10mg of Doxepin once a day and remained on it until about 6 months ago. I don’t break out in hives from anything specific, but lots of things aggravate my skin.

    I get itchy and burning sensations and the minute I itch, it turns red and raised, and bumpy. Anything from heat, to cold, to water, to clothes, etc can bother me…it’s as if I’m allergic to EVERYTHING!

    I started on Xyzal 6 months ago after seeing another allergist and I gotta say…this stuff is AMAAZING. It works for my seasonal allergies as well as the CIU. As long as I take it, I’m fine. I can even skip a day and only have very very minimal problems on that day. Sometimes, stress causes flare ups (like right now!!) but they’re short lived.

    Mine are 20-60 min flare ups several times a day usually. When on the medication, I’ll have contact dermatitis, but it doesn’t usually itch or burn, just becomes red and raised.

    I also found out I was lactose intolerant but cutting out dairy hasn’t had much of an effect on the urticaria.

    I’m just so sick of this. I’m miserable. I found a study at a university in Boston on Urticaria that I might participate in, just to feel like I’m doing more than waiting for answers.

    Reply

  32. Posted by Stacy on October 12, 2010 at 9:29 pm

    Happy 45th bday to me! I have had CIU since I was 12 years old. I had hives from age 12-24, then had 3 kids, then hives again from 34-37. And after 8 yres of remission, they returned for my 45th bday. I saw a Dr. Allen Kaplan (who I think has retired) in South Carolina and I went to Mayo Clinic in MN. I took Benadryl, Atarax, Allegra, Zantac, Zyrtec, Periactin, and Cyclosporin. Prednisone was the only thing that worked. When taking Cyclosporin my blood pressure went sky high so I took Toprol XL (a beta blocker) and my hives went away for 8 years.

    So, I am thinking that there is either a cardiac or hormonal connection that hasn’t been determined or researched. I go to sleep at night and wake up with my head covered in a hive hat. It is awful. The drugs don’t help. I am going to a new immunologist on Friday who will likely be insensitive but I will insist upon a prescription for Xyzal since I’ve never taken it.

    Doctors don’t know how badly hives suck. If you have cancer, you live or you die and there’s treatment. With hives, you live a poor itchy existance, you don’t die, but you simply have to tolerate. And, going to work covered in hives is awful and uncomfortable. I swear I could be suicidal with this crap all over my head and body!!! But, I have 3 teenagers so no worries there. Please, if anyone knows of a hormonal connection or something that makes this easier, let me know.

    Thanks
    Stacy

    Reply

    • Posted by Andrea on November 7, 2010 at 6:37 pm

      Stacy,
      I’m new to the CIU game- only 4 months now- but brought on by allergic reactions to drugs and wasp sting followed by the near death of my father. I am a firm believer that hormones and stress are a BIG factor for me. I was wondering if other people have had cortisol levels checked or other hormones and had any other insights on this connection?? BTW I’m 41, have 1 child, and a history of allergies, asthma, endometriosis, fibroids, chronic sinus infections and raynaud’s syndrome. Anyone else with similar issues? I have been living with the itching and “disfigurement” for only 4 months, but some days it can be pretty brutal. I will definitely check into some of the other supplements and medications you all have recommended. Thanks for your support! It’s nice to know there are other people dealing with this too.

      Reply

  33. Posted by Joseph Franklin on December 18, 2010 at 5:33 pm

    Thanks for the information. I have chronic urticaria and no one can understand what I am going through unless they have experienced it. I appreciate having a place I can go to find ideas on how to cope with this problem.

    Reply

  34. Posted by Tracy on December 29, 2010 at 2:57 pm

    I suppose anyone reading this knows how thankful I am to have found this site. I turned 35 this past April and honestly have not seen a completly well day since. I am a nurse in a large heart and vascular center, so needless to say I am stressed, but did not have problems until almost a year of working there. My chronic idiopathic hives came on a few at a time at the end of April and I have had pressure hive since 2003. By the 5th of May I was covered from head to toe in these horridly miserable splotches, which for some reason causes me to have increased muscle cramps in my legs and up each side of my spine. They have red rasberry outside edges and yellow centers and they move around on my skin almost like they are alive, then grow together to make even larger and larger hives. And yes they are inside too! I can feel them in my throat when I swallow and anymore, my stomach doesnt growl when I am hungry, it cramps till I am holding it and buckled over in pain. I ended up in the ER instead of working that night, and like most of the rest of you told by that doc “its just hives”! Well eight months later i still suffer with “just the hives”!
    My family doc thought it was anxiety/stress, she also consulted an allergist who suggested it was my thyroid. If anyone has their thyroid checked be sure to note one very important aspect of the test: there is a 5 panel and a 7 panel!! The 7 panel includes the levels of thyroid peroxidase(TP) and thyroglobulin(TG) these two can be way out of line while the other 5 are fine and it can be overlooked completly. My TP was imeasurable over 1000, normal if i remember right is like less than 10, and my TG was 187 with normal less than 40. So my first new drug was Synthroid and a diagnosis of Autoimmune Thyroiditis!
    June 9th I end up at the allergist office because the Synthroid just wasn’t keeping the hives at bay like it did at first. He prescribed Plaquenil 200mg twice a day . I made it 4 months with minimal hives. The odd part though, was every month I would get hives, and yes it would start 12-24 hours before menstration. So the family doc had me to start using progesterone cream thinking that this hormone was playing a role in keeping the hives at bay and when levels dropped just before menestration the hives would come back. Now my cycle is not quite regular anymore.
    In september, the 30th actually, after the monthly bout of hives. . .they just didn’t go away! the allergist took me off plaquenil, put me on cyclosporin, which about blew my head off with a blood pressure of 170/110– my norm is 112/68. I thought i was checking out of this life that morning. Took me off that one and put me on dapsone, normally used for treating leprosy. My pharmacist took time to speak with me just due to the variety of meds I kept coming to get. Now he follows my progress, or should i say nonprogress. Prednisone was the only relief, and after missing the whole month of May and then the month of Oct, my time off from the hospital was out and I had to go back. The allergist prescribed 20mg prednisone daily and i ended up getting hives every evening so we split the dose and this worked great till mid Nov when i started to break through the 20mg and had to start tappering up on the med instead of down which was the original plan.
    Since the first allergist would not test me for allergies I sought the dreaded second opinion. Hoping for someone who would just listen to me I went to a highly reccomended allergist local to the area in which I work. Even being a nurse myself, and trying to give this doc the very best assessment of my ordeal- he would interrupt me and tell me how it really was, HOW would he know, i was the one living it for the last 1/2 year. This was this past Dec 6th, got the allergy testing on the 14th, and sure enough allergic to nothing! This allergist put me on Periactin 4mg twice a day and doxepin 25mg two at night. Until this past Monday I was ok, but was having bouts of shortness of breath to the point where I could not go to work again- how frustrating this has been.
    So right now i am supposed to be taking: FOR ANXIETY/STRESS;
    BUSPIRONE 15MG TWICE DAILY,CELEXA 20MG DAILY, VALLIUM 2MG TWICE DAILY.
    ANTIHISTAMINES;
    ALLEGRA 180MG TWICE DAILY, ZANTAC 150MG TWICE DAILY, PREIACTIN 4 MG TWICE DAILY, DOXEPIN 50 MG AT NIGHT, ATARAX 25MG IN AM AND 100MG AT NIGHT.
    STEROIDS;
    PREDNISONE 10MG EVERY OTHER DAY FOR 5 MORE DAYS THEN 5MG EVERY OTHER DAY FOR THE NEXT MONTH (AND GAINED 25LBS).
    THEN SYNTHROID 37.5MCG TWICE DAILY
    AND PHERERGAN 50MG AS NEEDED (an anti-nausea med for when the hives are inside, but who wouldnt be nauseated after taking all that, not to mention my last set of labs came back showing slightly decreased liver function). The nurses I work with ask me how I stay awake enough to work.
    My thanks to Lyndon for initiating this conversation forum not only for the suggestions of what works and what doesn’t but just for a place to get all this off my mind and talk with others that TRUELY KNOW what i am dealing with. I will be trying your suggestions and trying not to figure out the cause anymore, it is quite frustrating enough without racking my brain and everyone elses i work with about what causes it could be. I am off work right now with a round of shortness of breath and outbreak of hives so no better time to initiate the new treatment. AGAIN. . . THANK YOU!!!

    ON A POSITIVE NOTE: I USED TO SMOKE AND IN THINKING IT MAY BE THE NEW CHEMICALS THAT MAKE CIGARETTES GO OUT IF NOT SMOKED, I DID QUIT OCT 26TH!

    SINCERE COMPASSION FOR ALL THOSE SUFFERING WITH JUST THE HIVES,
    TRACY

    Reply

  35. Thanks for all who keep adding their stories and solutions to the thread. It’s been very helpful just to know there are people who don’t think we’re crazy. Just an update on where I am.

    After taking just a generic Xyzal every morning for a few months, I switched to one generic Zyrtec every morning for the last couple months and haven’t been able to tell a difference. I don’t think I’m completely in remission or cured because if I go more than 36 hours without a Zyrtec my skin feels like it’s crawling or numbing in places, which usually precedes a breakout. I need to be on Zyrtec daily several times during the year for allergies anyway.

    I’m not taking the vitamin regimine like I should. Just a multi-vitamin daily with the Zyrtec. Ibuprofin and Naproxen still cause a reaction in me, so I just take Tylenol instead when needed.

    That’s it for me. I’m hoping to be completely back to normal one day perhaps or at least hoping not to have a major flare up that takes months to get back under control again. Please keep sharing your story and what works for you.

    Reply

  36. Posted by Elizabeth on January 5, 2011 at 1:35 pm

    Thanks to all who contributed.
    Please notify of updates.

    Reply

  37. Posted by JD on January 9, 2011 at 1:47 am

    Hi all – I am also a CIU sufferer. I have had chronic hives since an allergic reaction to aspirin in 1996. I’ve been on every antihistamine imaginable. Periactin worked for a few years but then stopped. I’ve been doing Zyrtec for at least five years but now that is starting to not control it well. Recently went to a new allergist who prescribed Xyzal, haven’t started it yet. Also going back on the Zantac 2x a day. Benadryl does nothing for relief. Triggers for me include cold and hormonal (worst through my cycle week). Alcohol and stress exacerbate it as well. I also notice if I wear certain fabrics or tight shoes that I start to break out… strange triggers. Blood tests revealed a positive cryofibrinogen level. Positive ice cube test. I just moved to a new city and I’m thinking of trying a naturopathic doctor. Has anyone done that?

    Thanks! Comfort and relief to all CIU sufferers! U are not alone!

    Reply

    • Posted by Tracy on January 11, 2011 at 10:33 pm

      I see a naturalistic doctor on the 26th of January. Im aquainted with a few people who have been to this doctor and have nothing but good things to say, so we’ll see how it goes. One of the persons I spoke with said that she was just swelling, not hives, and they figured out she had a reaction to the coating of one of the meds she had been taking. I’ll post about the visit, let us know how yours goes.

      Reply

    • Posted by Tracy on January 26, 2011 at 2:30 pm

      OK, I saw my naturalistic doctor today. He suggests that my liver is weak and damaged and the toxins and poisons that would otherwise be removed by natural liver function is building up in the blood and presents in the skin as hives. Its understandable then why antihistamines didn’t work and actually added to the problem.

      We are not changing things up to quickly so we can pinpoint what is and is not working. Eventually I will replace the buspar and celexa with folic acid, which in a study of pregnant women taking increased doses suffered no post partum depression. He also suggested that the number one food for anyone suffering with hives is beets, anyway you can get them, fresh, frozen, canned, pickled, and to eat a minimum of one beet every day! I am to drink the juice of one lemon or lime everyday to open the ducts of the liver and take milk thistle 900 mg everyday due to its hepatoprotective mechanism. The fish oil will now be 6000 mg a day due to the anti inflammatory properties. Decrease comsumption of sugar and caffiene and start a mediterranian diet.

      I am to follow up in 30 days to see how the progress is going. I’ll keep everyone posted on how it is going.

      Reply

      • Thanks for sharing Tracy. Hope you get some great results. That’s really interesting about the beets. I wonder why they are supposed to help. I’ve heard about lemon/limes for liver. Sounds like the Milk Thistle might not be a bad idea. When you mentioned liver issues, it jarred a memory that my liver enzymes were all out of whack on a test several years ago, mimicking hepatitis effects or something. I’m wondering if there’s a connection between liver function and hives now. Glad I’m in the dormant stage with just an antihistamine a day now, but I would still love to get to the bottom of this and fix it from happening again. I spent 30 years of my life without hives and would like to know I’m back to normal for good. Best of luck to you!

  38. Posted by Tracy on January 11, 2011 at 10:25 pm

    Well, here I am 2 weeks later. One doctor wouldn’t give me a script for Xyzal, told me to just use Zyrtec, but another one did write a scrpit for it. Took my first one today at 5pm. It is near 11p now and I can already feel my skin calming down. The true test will be what I wake up with in the morning. I started the vitamin regimin on Dec 30 then my PCP tweeked the doses for me.
    My PCP beleives an extremely warm bath with a scrubie, back brush, and moisturizing body wash is one of the worse things you could do for this condition, but it has been taking my itch away. After the bath I use a deep moisturizing lotion from head to toe. I have much less itching than if i take the cool shower.
    I still have the flare ups during my cycle, so we stopped the progesterone cream. I no longer take anti-histamines other than xyzal. I believe it was harder to come off the prednisone while I was on those. I was completely clear for several days until the start of my cycle then the hives exploded.
    Now my meds are: celexa 20mg, buspirone 15mg bid, synthroid 37.5mcg in am and 25mcg at nite, atarax 50mg at nite as needed and vallium 2mg as needed, xyzal 5mg at night ( because my hive are worse between 3 and 5 am), 1 multivitamin, vitamin C & D 2000mg and 2000 iu, B-complex 50mg each, calcium 600mg (due to possible damage to bones from high dose steroid therapy), 450mg apple cider vinegar tabs, and 4000mg fish oil. This sounds like a lot, but I feel better and have about half the prescription meds as before. It is very hard to keep a positive attitude, but that is a major key for relief. I have been drinking unsweetened herbal teas at nite before bed to stay relaxed and help set aside time for reflection or meditation.
    Praying for relief for everyone!

    Reply

  39. Posted by Ron on January 27, 2011 at 4:07 pm

    Take Elavil 25mg every day. Have been CIU sufferer with pressure urticaria as well.

    Elavil is the ONLY thing that has worked. TRY IT!!

    Reply

  40. Posted by Molly on January 30, 2011 at 10:23 pm

    Thanks to everyone for their information and posts. This is the first site I have found that is so current and informative. My history: when my sister and I were very little and we just recovered from a bad flu, the first or second day we felt great we would break out head to toe in hives. Our family doctor told my mother we were allergic to our own immune systems. At 12, one summer every time I got into a pool after being out in the sun, I would break out in hives. The allergist told me I was allergic to temperature change. At 33 I moved to the high country in Colorado and it has gotten progressively worse over the past 8 years. At first I had just random small hives where cloths were rubbing on me – like a jog bra. But for the past couple of months it has been pretty bad. I only use hydrocortisone cream and hate using that. I don’t take anything other than supplements.

    I have had periods of relief – a few years a ago a week in Hawaii was completely hive free. At work, I have to do a lot of laundry and thought the hives were a reaction to a potent product we had just started using. Once we switched, they were greatly reduced, but not gone.

    After reading some suggestions I will start taking more supplements. I went off all supplements in December by the advice of a dermatologist and a small rash that I had on my face (was from a new facial product). But the hives haven’t changed. So as of today I am back on vitamin C, krill oil and will start with more apple cider vinegar.

    I am curious about liver health and do take milk thistle. I have a new book called Body Ecology Diet:
    http://www.bodyecology.com/
    that focuses on candida overgrowth as a cause for many health issues. Has anyone had any experience or problems with that? She has a section on liver detoxing as well.
    I just bought a skin cream today:
    http://www.skin-remedies-store.com/
    The double strength derma cream with urea that I read is a natural help for itchy skin. It is an ingredient in calamine lotion. Has anyone used calamine with any results or a cream with urea?

    I am currently off corn and wheat but haven’t noticed any changes. I went off wine but no changes there either. I have never had a food allergy but have always been allergic to cats, pollen, dust, etc.

    I plan on getting my annual physical and will be requesting a lot of blood tests – cortisol, vitamin D levels, general hormone levels, liver health, and a few more.

    Thanks again for all of the posts and I wish all of you calm and healthy skin!!!
    -Molly

    Reply

  41. [...] Home « Living with Chronic Idiopathic Urticaria [...]

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  42. [...] to all who have shared their experiences and successes on my first post. Your input helps all of us, if only to know we’re not the only ones dealing with this. I [...]

    Reply

  43. I’ve read every single story here and each one touched me deeply. I have been suffering for about 1 1/2 years now. I think it’s actually been longer because I had it on my head earlier, but because I couldn’t see it I just dealt with it, but it’s probably been more like 2 years. I’m still on Prednisone and all I can say is thank goodness for my daughter or I would probably have given in to despair many times by now.

    I am very curious to know more about the rash itself. Mine may start out itchy, but it very quickly turns painful. It gets swollen and very hot. I might be able to deal with itchy, but the pain is intense. If left alone the skin will actually start turning hard and a very weird, hard to describe texture. No doctor I’ve ever been to, and I’ve been to many, seems to care in the least about how it presents.

    My frustration with doctors is extreme. None of them seem to actually want a real history, it takes too long. As a child and young adult I was highly allergic to anything that stung or bit. My legs were constantly covered with bites and sores. I’ve also always had an allergy to metals and am very interested in the possibility of my fillings having turned toxic on me. I had other issues leading up to this and none of them seem to care in the least.

    I’ve tried most of the vitamins above for my arthritis and past skin issues, but never all together and I’ve never taken additional c. As soon as I can afford to, I’m going to try the recommended vitamin regime.

    I’m still on Prednisone, for over a year now. I started at a high of 80mg a day and have gotten down to 5mg a day, but I’ve been breaking out all along and it seems to be ramping up worse again. I’ve just started the xyal and haven’t seen much improvement yet, so I’m hoping I’m not the one person this med doesn’t help.

    Many people said they’d keep us posted on progress, but haven’t. I’d sure like to hear how people are doing now and what else they might have learned.

    Reply

  44. Posted by karen on April 7, 2011 at 8:25 pm

    my daughter is at the end of her rope with chronic immune hives.she is 19 and had them a year now with not much relief.she has stopped gluten and taken steroids for 8 months and now allegra ,doxepin , zyrtec and benadryl to sleep so she wont scratch in the night.she always had beautiful skin and now there is not a place that is not scarred or currently bleeding.she says the pain is incredible on top of an unrelenting itch.on top of that she gets angioedema out of the blue which causes intense swelling of her face including lips and eyelids.she has also lost half of the hair on her head.we have been to dermatoligists,rheumatologists allergists, and immunologists.the biggest help was a naturopath.she takes vitamin D and fish oiland folic acid and also takes armour thyroid….thank god for vanicreme products.we slether her many times a day.i think CIU is a very disabling condition.it is not just hives.i just wish people would understand that it is painful and mentally demoralizing.

    Reply

    • Posted by Helen on May 23, 2011 at 11:34 pm

      Karen, I totally sympathize. It is a terrible affliction that I would not wish on my worst enemy. I encourage you to try l-lysine, an amino acid, for the itch. It is recommended for sun rashes, but it worked right away on my itchy skin. Also, see about a really clean diet with only lean meat and veg for a while to give her body a rest. Zantac is a stomach-acid reducer that acts as an H2 blocker and can help in addition to the H1 blockers like Zyrtec and Claritin.
      I understand about the bad days, we all do here. She needs to know she isn’t alone in the world.

      Reply

  45. Posted by Ann on July 3, 2011 at 2:54 pm

    One morning I woke up and my ears were burning and when I looked at myself my ears were four times the size. I thought wow can’t wear the earnings that I wore the nigh before. But it did not stop there. For over 12 weeks hives have been having a party on my skin and I was the entertainment. So the week after my first experience and looking like yoda from star wars I woke up and the hives were so bad around my eyes that I could not open them. Then the war between hives and me started. Third week I was rushed to the hospital with hives over 98% of my body. I was told it was just hive and sent home with pills that start out taking 6 a day and 5 the next and so forth until they were gone. 4 hours later I was covered with hives. The doctor at the hospital told me that only 2 % of people with hive find out what caused it in the first place.

    I have done my research on net to find out how to stop this madness as my hives are now a full time job. I would wish this on anyone and It has changed my life. I have clean my living space from top to bottom and have change the way I look at food. I am no longer the woman that I was 12 weeks ago. The first 8 weeks I was drug on pills and more pill that only made me sleep. I had 1/2 of day with hives and I was amazed on wonderful it felt to be free of them. I have learned to live with the fact that I have hives and deal with the fact that someday they will be gone and can get back to just being me. I am a more quiet person and have been taking long walks and going out more in the last few weeks. I smell like a salad from the Braggs apple cider vinegar but its the only thing help and it able’s me to sleep at night. The only hope I have is that someday this will stop but right now what is hives telling me? I was only sleeping only 4 hours a night and working 18 hours a day and not eating right. To top it off I was under so much stress with my business that with bad eating no sleeping and stress my body broke down and said you need to stop this. So my body took over when I was not doing what was right for it. This has changed me on many levels and I do believe that my body just give up.

    So what now? I learn to be quite and to let go of who I was before this madness and yes smell the roses. I have leaned to stay in the moment and let go. I’m glad that I found this wonderful blog as it has shown me that I’m not alone in all of this. so many of my friends have come to me with their stories about hives. I have learned so much about hives and the state of mind that can be changed over night. I have gone out and bought all the vitamins that have been talked about here. This morning I wish I could say that I was free from hives but I was covered again with hives. But what I don’t have now is the stress of not being able to deal with it. I have only been on the vitamins along with some of the same meds that have been stated on this blog. I know my body is fighting these out breaks as i said before these hives likes to party on my skin like there is no tomorrow. What I have to say to the hives. Thank you for the lessons that I have learned from you so now be gone as I’m am done letting you control my life, body and soul. I have learned to be a little gentle with me and enjoy the quiet times when the hives are at its worst. My hives is not who I am and I will someday not them but now I know I’m not alone in this journey. To the doctors when you are faced with someone that has hives be a bit more gentle to them as I now understand that it must really deal with your doctors head when he or she can’t really hep with something like this. Hives have a mind of its own and it will control your life if you let it.

    To everyone that gets hives i say that your body is just the vessel that carries your soul and this relationship with hive will some day end as we have no control over it . So go out and enjoy life and let it all go. I’m saying this at a moment when I’m covered with hives as I’m trying to stay positive about this and get out an enjoy life again. Thank you for this blog post …

    Ann

    Reply

  46. Thanks for sharing your story, Ann. We appreciate all the comments and encouragement from all who have kept the conversation going.

    Reply

  47. Posted by LamuzNick on October 10, 2011 at 12:08 pm

    Look at me!

    Reply

  48. Posted by Mirna on January 7, 2012 at 6:38 am

    Hi, I’m glad to have found this site and to have read every single person’s story. My CU started back in April and from reading what many have wrote here, it appears mine developed due to the antibiotics given during dental work. I have had skin issues due to pregnancy, PUPPPS in 1st pregnancy and Cholestasis (high bile levels) in my 2nd and 3rd pregnancy but they went as soon as I delivered my children. In May I was put on Prednisone and Allegra 2 times a day, I was tapered off the prednisone but the CU returned in September. Again I was put on another round of prednisone and this time it was tapered off beginning of November. This last time the CU came at it’s worst in December and my allergist said this would be the last round of prednisone otherwise an alternative medication would need to be prescribed. I’m excited to start the vitamin regimen you detailed, I have already started the Apple Cider Vinegar as I’ve heard that it helps for many illnesses. My question is, when can I hope to stop taking the prednisone and allegra? Can I stop taking those meds now (I’m afraid to flare up and make it worse) and just use vitamin supplements, or should I continue on the prednisone until my immune system and my ph levels reach a certain level and then its safe to come off it? If I read correctly, you posted that most people say it takes 3months before they see any results, but I want to slowly cut down on my prednisone and allegra. Right now I’m on 10mg Prednisone and 1 Allegra in the morning and 5mg of Prednisone and 1 Allegra at night. Every week the allergist is cutting down on 5mg of the Prednisone in hopes that it will keep me in remission, but the sooner I can be off the steroids and the antihistimines would be a life saver. Await your reply…desperate in FLORIDA!!!!

    Reply

  49. Posted by Mirna on January 7, 2012 at 7:00 am

    Also how much Vitamin C should I take? I see the Vitamin D is 1000 IU and 1760 mg of Fish Oil Omega-3 supplement twice a day but I would like to know how much Vitamin C to take. Thanks again!!!

    Reply

  50. Posted by Alan, Ireland on April 15, 2012 at 2:58 pm

    Hi Lyndon and everyone,

    I have been suffering from CIU since I was 10 years old so formore th an 25 years now. It has been alot worse in the last few years. I can link alot of my CIU to major life events and stressful times but usually there is no explanation. For the first 15 years, I had hives every day but not as bad as they are now.

    I have been to every type of doctor, dermatologist and homeopath in several different countries over 25 years. I have tried cyclosporin, piriton and every type of available antihistamine, singular and plaquenil, cortizone creams and other topical steroids. once a bout of hives starts, it is almost impossible to get it under control. I have had two breaks from the hives – once between 2004 and 2006 and between 2008 and 2011 I was hive free (after a course of homeopathy) but the hives came back in december 2011 and have been there every day since. always worse in the evening. i find that running at the gym and steam room a bit helpful, but not for long.

    I was prescribed singular and plaquenil about one month ago but this seems to have made the hives worse so i have stopped taking them. I found this forum and it is the first time i feel that i am talking to people who understand what its like to live with this day in day out with no possibility of a cure. and nobody is trying to sell anything. so after reading all the contributions, i have started taking the following every day:-

    one rinozal (generic zyzal) and one zantac in the morning and the same again in the evening. 3 omega 3 tablets per day, one vitamin c and one vitamin d and one l-lysene. I am nervous about the apple cider vinegar becuase when i was taking singular i tried it and it seemed to make things worse. i might try it again but not for the moment.

    I am only doing this for one week but my hives do seem to be a little more under control than they were. i still have them all over my body but they dont seem as big or as itchy. to be honest, i’m scard to even hope that this might work (as i am completely out of ideas) but it is at least really comforting to be able to connect with people who have suffered with this for as long as i have. at least i dont feel so alone with this. i’m lucky that my wife and family are understanding.

    for anyone suffering from this, i completely understand their feelings and if i ever win the lottery i will be spending huge money on research for a cure for the awful CIU!!! i would love to hear any feedback you may have and i will keep you posted on my progress with the new regime of vitamins and antihistamines. alan

    Reply

  51. Posted by Kamille on August 31, 2012 at 9:25 pm

    Hi Everyone,

    There haven’t been any comments lately but I’m hoping people will continue to share. I’m having my second bout of hives. The first lasted for almost 4 years and disappeared mysteriously. The second bout started about 2 months ago and right now is as bad as it was during the worst part of the first bout. Last time around I got some relief from Zyrtec. For some reason the liquid worked better for me than the tablets. I tried acupuncture and acupressure, saw a homeopathic doctor, a naturopath, a dermatologist, allergist, even an immunologist. Tried H1 antihistamines alone and in combo with H2 antihistamines, tried an elimination diet, all kinds of creams… nothing really helped except the liquid Zyrtec and even taking that I sometimes had really bad breakouts and pretty bad angioedema. This time the Zyrtec is doing nothing. Nor did Claritin, Allegra, or Benadryl.

    I did some internet research to see if there were any new treatments in the medical literature and that’s how I found out about levocetirizine. I just got an Rx today and it is not covered by my insurance but I figured I’d try a months’ worth and if it helped maybe see if I could get it overseas for cheaper. I was wondering if it needs to build up in your system to be effective or if it’s an instant remedy. I took my first dose about 7 hours ago and so far I’m not getting any relief.

    I agree with all the posters about how hard this can be. Chronic illness of any kind can be so debilitating and it is so heartbreaking to read about the tough times and lack of compassion that so many of us have experienced. I would love to hear checkins from people about how things are going for them now and what types of supplement and med regimes people are currently on. Thanks.

    Reply

  52. Posted by LJR on December 13, 2012 at 2:03 pm

    Thank you for all our comments. My husband suffers from chronic hives and in the past I have been a bit unsympathetic. Having read your posts, I know a little more about how he feels and will support him better in future.

    Reply

    • Posted by Eric on December 17, 2012 at 9:28 am

      I’m at the Dr office now getting a tests done. Thanks for all the stories, if anything it feels good to know I’m not alone. I have had CIU for 17 years or so. I’ll post back if I ever figure this nightmare out.

      Reply

  53. Hi there, yup this piece of writing is in fact fastidious and I have learned lot of things from it on the topic of
    blogging. thanks.

    Reply

  54. Posted by Lee P. on January 22, 2013 at 9:02 pm

    Xyzal has really helped. Also, try Vicks Vapor Rub as it cools and stops the itching.

    Reply

  55. Posted by lois on January 26, 2013 at 8:13 pm

    What worked for me after 10 years was an immuno supressant, cyclosporine. I was on it for about 5 months and it went into remission for 5 years. I am going to have to go back to my oncologist (that is the doctor that was finally able to diagnose and help). I am slowly getting the hives again. btw, I suffer from autoimmune idiopathic urticaria based on a test whereby my blood wass spun and my antibodies were injected to my skin. Anyway, I really do not want to go on meds again and am thinking of trying these extra vitamins/ acv.

    Reply

  56. Please have your Liver checked, also Hypoglycemia. Your liver cannot handle your
    diet (we urticaria sufferers cannot feed our liver alcohol!!!) Sweets, and high carbs
    is what brings on the wheals and angiodema for me. Seven years now and I have
    learned through trial and error and much research. Most grains, even oatmeal, anything with corn in it. Especially high fructose corn syrup. Again, this stuff is in foods
    that are high in carbs and sugar. I had a hard time at first with beans and green stuff.
    (lol) No, really its changing the way we eat. Gotta eat healthy. It keeps me busy washing and chopping and steaming, etc. BUT< IT WORKS!!
    I had hepatitis when I was in my early twenties, and I also am hypoglycemic.
    I think my liver had a relapse or hard time handling all the crap I was feeding it.
    I ate sweets and breads (whatever I wanted) and I drank beer or wine with Italian
    food. Sometimes, on a daily basis. And, I am a small female, now 50ish. Yeah, I
    hate it!! I should be eating whatever I want now instead of doing all the cooking.
    Eating and drinking whatever I wanted is what got me in the condition that I am in.
    And, you gotta stop wasting your $$$ on doctors because they don't know.
    Seven years of hell and now I rarely take a zyrtec (generic of course). I bought
    some apple cider vinegar with the mother in it today. I am going to do that now
    once a day, mixed with water. The vinegar is how I found you guys.
    I hope some of this helps someone be healthy and hive free again.
    DeAnne

    Reply

  57. instead drinking the apple cider, can i just put it on my skin with the rashes?

    Reply

    • Posted by claire-jayne on July 29, 2013 at 1:33 pm

      I have been living with what I was led to believe was Rosacea for 9 years.Given Lymecycline, tetracycline etc but to no avail. Then I saw an arthritis Dr and he said it was most definately Chronic Urticaria. I have now been on Prednisolone, cetirizine, fexofenadine, levocetirizine and still no joy. It has now spread down my neck and around my chest and shoulders. Im covered in wheals, plaques, painful pimples and bumps. Its been a 9 year nightmare to say the least!!!! It literally takes over your entire quality of life, and ive sepnt a fortune on cover up make-up just to leve the house.

      It is so upsetting and I think if youve not experienced it its most definately difficult for family and friends to comprehend.just how bad it feels.

      I really hope I find something to manage it soon as im at my wits end now :(((

      Reply

  58. Posted by Paul on October 27, 2013 at 5:03 am

    Hi from England. I’ve had Idiopathic Urticaria from the age of 9 i’m now 46. I’ve had quite long periods of normal life (6,12mths) after the age 35, currently going through quite a harsh breakout, all over my body, head, eyes etc, very depressing!! Drugs don’t really work for me, some light relief from benadryl, going to try vitamins as suggested above. I’ve had it so long i tend to just live through it without drugs, sounds heroic but that’s all i can do. Mine came on again after a party at my sisters, in the garden late at night i caught a cold, next day hives, that was 5 weeks ago. I’m convinced after all the years having tests for allergies its’ immune system which causes it (not new news i know).

    I find trying to keep very busy helps take my mind off it for short periods, hot and cold showers help short term loose clothing, go cammando if you can. I’ve got some horrendous brusing on my legs, scratching through my jeans, I hate facing people when my face swells up but force myself to carry on with my life, carry on living with it try different things, the drugs don’t work. Good luck with this condition, good to see people sharing idea’s.

    Paul

    Reply

  59. Posted by Emily on November 5, 2013 at 10:55 pm

    I’m 29 years old, and have had chronic idiopathic Uticaria since age 11. I’ve tried almost everything (I can afford) to get to the bottom of the cause- and have gotten nowhere. Three days before I took a pregnancy test, I had the worst hives I’ve had in years. After this bout, I’ve been free from hives ever since. I’ve now gone for 5 months without ANY hives- which is amazing. Everything I’ve read about hives and pregnancy, is that they typically get worse. I’ve not found anything about anyone who’s suffered from chronic Uticaria that’s been relieved during pregnancy. Aside from hormonal changes, I look at what I’m doing differently. I’ve limited my caffeine, I’m taking a daily prenatal vitamin, eating whole foods and limited processed foods, and I’m drinking more water and %100 percent fruit and vegetable juices. That’s it. Just curious if anyone else out there has has this same experience?

    Reply

  60. Posted by Marianne on January 14, 2014 at 1:13 pm

    Hi,I have yet to be diagnosed for my Hives and swelling but after reading this blog I now know. I have been to an allergist who told me I need to have my thyroid numbers checked (I have hypothyroid/hoshimotos). Did that and they were fine. My regular doctor prescribed levocetirizine (5 mg) didn’t do anything (but don’t think I was taking enough). Went to dermatologist and her prescribed prednisone and h1 (doxepin) and h2 (rantitidine) anti histamines. Felt great…but the doxepine was making me very depressed and sad. Once i finished the prednisone the hives flared up again. I don’t know what to do anymore. The doctors make me think I am crazy. I am now just takine 5mg of levocetrizine 2000iu Vit D and B complex (which they found I was deficient in with all the blood work done). Today I incorporated the Ranitidine back in, I am hoping that will help. I will go and by all the vitamins mentioned above, its worth a try. At this point I think I really need to start watching the food intake and what causes flare ups. I definitely cannot take ibiprofin or naproxin anymore. This is becoming a full time job for me but its making me crazy. I am so happy to have found this blog and I find comfort knowing I am not crazy and that others are going thru similar things. Please let me know how much Vitamin C I should incorporate. Thank you all so much

    Reply

  61. Posted by Ee Ling on January 22, 2014 at 9:36 am

    Hi all!

    I’m a 35 year old female living in Singapore and I found this site while looking for natural remedies to hives. I started having them near to Xmas last year (2013) – nothing changed in my life – they just appeared!

    I’ve been to see a doc who just gave me Alloris and another allergy med plus an itching med to take at night. He also said no need to see an allergist or have any sorts of test as its nothing to be worried about.

    But since then, I’ve been getting hives daily on my arms and leg, and occasionally the neck. It’s Ben extremely annoying and now I am really super paranoid about any itch that I feel – I immediately check to see if its hives and most of the time it unfortunately. is.

    I’ve done some research before finding this site and all I know now are apple cider vinegar, plenty of water, and avoiding tomatoes. I’ve also looked at low histamine diet stuff but such a diet is impossible to follow in Singapore!

    I’m trying oregano oil next. But I also see that I should load up on vit c, milk thistle, omega 3. I wonder if its star to start all of them together…

    Interesting, I read that basil helps – steam some leaves in hot steam and apply to affected areas – but I guess this just helps to relieves the itch and not prevent it. Another topical thing that supposedly works is is aloe vera (the plant). I’ve not tried both yet though.

    I’ve also read that TCM helps and I’m going to try that soon.

    Am trying to start with all natural remedies instead of medicines and hopefully it works! Will update if they do!

    And I absolutely agree – only people who have experienced it knows how distressing it is. It is not JUST hives!!

    Reply

  62. Posted by Martine on February 7, 2014 at 3:59 pm

    Hi, where do I begin? Ok! From the beginning would be a good place.
    My CIU (or what I think it is) didn’t start off with hives. It started off as angioedema. First the ankles, then the knees, & then it gradually made its way up my body. This all began late 2011. At first, I thought that perhaps, I had caught a skin infection of some sort since I was doing housekeeping at the time, but even after I stopped, the swelling, itching, & redness continued to manifest in sometimes, violent ways.
    Last year alone, I was hospitalized 7 times! This ailment or whatever you want to call it robbed me of myself, my joy, my life, & perhaps relationship. The steroids caused me to balloon to a size that I am not comfortable with & neither are my knees. Perhaps, its the CIU that’s causing the osteoarthritis (both knees) that I was also diagnosed with in 2012.
    Since I didn’t have health insurance, my resources were limited, so I wasn’t able to follow a clean diet filled with veggies & fruits, but I did give up meat & smoking. I took on juicing after watching the documentary Fat, Sick, & Nearly Dead, & followed it to the best of my abilities. I have to say that a juicing diet isn’t cheap.
    Nevertheless, the hives stopped on their own last March. I continued my same regimen & lifestyle, however, the hives came back again, & this time with a vengeance.
    I started seeing a rheumatologist after my hospitalization, and she now has me on a steroid (Prednisone) regimen for a month, Ranitidine, & Certirizine, & I feel AWFUL. The steroids are stirring up all sorts emotions in me. I am depressed. I feel disfigured because I now have a moon face, and I am ALWAYS hungry. I started taking action again & starting juicing & sticking only to salads & other healthy items, but I have to tell you, it is sooooooooo hard. I am scared, frustrated, and depressed, however, I will not give up. I realize that I am not alone out there, & regardless of how much doctor’s say they cannot help, I am sure that one of us here will find a way to liberate us from this curse.
    That been said, I’s like to close with recommending that you all watch Fat, Sick, & Nearly Dead. Joe Cross (the guy that the documentary is about), also had CIU, & after he juiced for 90 days, he was off all of his meds, even the ones for HBP, cholesterol! He lost weight, & he still continues to look great. I will post a link from one of his followers.
    Since I have nothing to lose, I am also going to give it a try. I know that it is going to be didifficult to live off of juices & salads, especially with my ferocious appetite, but I MUST try this. So, please wish me luck!

    http://www.rebootwithjoe.com/corky-cured-her-chronic-urticaria-and-lost-35-lbs/

    Reply

  63. Posted by James on February 17, 2014 at 2:57 pm

    Hi everyone,

    I sympathise with you all! But this has helped cure it for years at a time for me.

    The first time I had hives I was 19, I changed my diet several times to no success. I was eventually put on steroids that worked for 6months then they came back with avengence. I went and saw a Chinese herbalist/doctor in the UK. He gave me these bags of tea to drink that where horrid, the bag contained leaves and bark from trees and I thought he was crazy, but I was so desperate I would try anything. It worked, after drinking this horrible tea I didn’t have hives for 10 years. They came back in 2008(after the stock market crash I work in finance), I saw another Chinese herbalist in Sydney and they went again. My mother has unfortunately recently passed away and I have seen the same Chinese herbalist but it is taking much longer this time round. She told me it is to do with the liver over heating.
    Her name is Dr Anna and she works at the Balmain Chinese herbal centre in Sydney Australia. I highly recommend this to everyone here, prescription drugs only worked for about 2 months for me and then I build up an immunity to the drugs.
    I hope this helps!

    Reply

    • Posted by Martine on February 17, 2014 at 11:32 pm

      Hi James!
      Happy to hear that you’ve had some success with finding a remedy.
      What’s the name of the tea you were drinking?
      I’ve been drinking dandelion root tea cause I hear its good for liver cleansing.

      Reply

      • Posted by Martine on February 17, 2014 at 11:37 pm

        I’m also very sorry to hear about your mother.
        I am certain that these hives are probably linked somehow to stress, because even though I’m not in finance I live a pretty hectic life too.
        I’ve been on Prednisone for the past month. I began at 40 MG & was supposed to taper back the dosage weekly, but now that I am at 20MG, the hives are starting to come back, so of course, the doctor is trying to keep me on the regimen longer.
        Like you I changed my diet & lifestyle, but still no relief. So I’d love to know the name of the tea that got rid of your hives.

  64. Posted by Marianne on February 18, 2014 at 9:50 am

    Hi all, since my last post I have gone to see a Holistic Doctor and have taken a different approach using Alternative Medicine. After his thorough testing he came to the conclusion that my lead levels were extremely high and my cortisol level was very low,…therefore my immune system is totally out of wack….hence causing it to attack my skin and causing these hives. I have since started whats called “Chelation Theraphy” which detox’s your body of heavy metals, get weekly injections of Glutathione, which a a unbelievable antioxidant. Also I am getting bi-weekly treatments of “Ozone Therapy”. This doctor has uncovered what no other doctor would every find. I have not felt this good in years. I suggest you all google this information and consult with an Alternative Medical Doctor. I was not accepting the answer that you may never know what the cause of your Chronic Urticaria is….these regular doctors will only treat you and write prescriptions that don’t always help, but you need to get to the cause…..I am so grateful and I wanted to share this with you because I know how devastating it is to wake up everyday and deal with the chronic hives. Good Luck!!!

    Reply

    • Posted by Martine on February 19, 2014 at 9:34 am

      Hello Marianne.
      Thank you so much for sharing your experience with us.
      Like you, I have been suffering from CIU for the past 2 years, & haven’t found any relief. I am now seeing me a Rheumatologist, that has me a high dose of Prednisone, that has just robbed me of myself. Weight gain, moon face, mood swings, & insatiable appetite. I have had numerous tests done, but nothing like what you’ve had. I will certainly ask to have something similar done. I have started lookng into an Alternative Medical Doctor here in Florida, but haven’t had much luck as of yet. I’m not sure where you are located, but perhaps, your doctor may know of one in Miami. Would you mind inquiring the next time you see your doctor? I’d greatly appreciate it!
      Again, thank you so much for sharing!

      Reply

    • Posted by Martine on February 26, 2014 at 11:50 am

      Hi Marianne,
      Hope all is well.
      Monday, I had a severe outbreak of the hives & edema. I decided to troop it, & not take the Prednisone. Instead, I took Allegra 180MG & Zyrtec 10MG during the day, then Doxepin 20MG & Ranatidine 300MG at night, which seems to be working, however, since its only day 3, its too early to say.
      Ialso went back to the doctor that put me on the Prednisone regimen & had her draw labs to tests metals & my thyroids (I couldn’t believe that she didn’t think to have them done before).
      I’m waiting on those results
      Unfortunately, my insurance doesn’t cover any Homeopathic or Holistic doctors, & they are very pricey, so I’ll hold off on that for now, but again, I thank you.

      Have a great day!

      Reply

  65. Posted by Marianne on February 19, 2014 at 2:31 pm

    Martine, I feel your pain. The Prednisone is just a temporary thing and shouldn’t be used long term. Since I have been on a supplement the doctor game me for my low Cortisol levels (which is a natural steroid in your body) I have been able to stop the prednisone. I am still taking the antihistamines, since I just have had 2 treatments. The dermatologist said to wait until I am hive-free to start weening off of them one by one. I will certainly ask my Holistic dr for a recommendation in the Miami area, but you can google “Chelation Therapy” in Miami area, or go to this link: http://www.o3center.org/Clinics/index.html and search your area. I would think any Alternative Med DR would check you for heavy metals and such virus’. I had a bunch that I never new I had. This is actually curing not only the hives, but my daily exhaustion that I always related to my Hosimotos Disease, which, by the way, may very well be cured after my treatments. I am also on an “elimination diet” starting with Dairy then will do gluten-free, eggs and so on…to see what foods cause the flare ups. It a process and I will probably need about 16 treatments. SO far I have had 2 treatments and feel so so much better. This has opened my eyes to a whole new world of toxins in the foods, additives and all these chemicals we are exposed to on a daily basis. High levels of toxins in your body can cause a number of serious disease (which thankfully I did not have, only minor ones). One that it can cause is Alzheimer’s, which my father had. My condition is not hereditary but “genetic” which the doctor says nothing is hereditary its always genetic, the question is what you do in your life that sets its off or just the way your body absorbs things. So my belief is that my father more than likely had high levels of toxins in his body and it triggered that gene. Whether its the foods we eat the lifestyle we live or whatever else. Its a whole new world for me now…..

    Reply

  66. Posted by Martine on February 20, 2014 at 9:44 am

    Thank you so much for sharing this information with me, Marianne. I have already checked out the link you attached & found some doctors here, that I am going to contact.
    I cannot begin to tell you how hopeful I feel when I read a story like yours. I have gone to so many doctors, & have gotten so many insincere apologies from them because they “can’t help me”. My ailment has definitely changed my life in so many ways- good & bad. Like you, I feel like I am born again. Lol. This is a whole new world for me too! I didn’t know about any of this stuff, & every day I am learning more.
    This May will make it 1 year since I’ve eaten meat (air & land animals), & I after reading several articles about the bacteria they are finding meats, I don’t regret it. I try to get my friends & family on board by sharing these articles with them, but they turn the blind eye. I guess they aren’t so concerned because they aren’t sick- yet. I was once the same too.
    I am sorry to hear about your father’s passing, and I am glad to hear that you’re being proactive in getting/staying healthy. I think it’s important for everyone to do their due diligence to being healthy.
    My goal right now, is to get off the Prednisone ASAP. I feel & look terrible because of this drug, & although I am still taking them, I still get mild outbreaks of the hives. Also, today is my 3rd day since I’ve started my juicing ‘diet’ to detoxify my body. It’s been tough, but I am determined to sticking to it for as long as necessary.
    I’m not sure if you’ve seen or heard of this documentary, Fat, Sick, & Nearly Dead, if not I recommend it. This is where I got the idea to do the juicing diet.

    http://www.rebootwithjoe.com/about/fat-sick-and-nearly-dead/

    Again, thank you so much for the info, & I will keep you posted as to my findings. Have a great day!

    Reply

  67. I have had CU now since June 2001 and have gotten them under control for the past year without any medication. My drug combination was always Hydroxzine at night and Allegra (highest dose) during the day. I have gone through Benadryl, Zyrtec, Doxepin, Ranitidine you name it.

    I rarely use anything for pain and Advil will land me in the ER. I have had so many shots of Epinephrine in my life that I am no longer allowed to take them because of potential heart issues. That first summer, I not only had hives but Edema and my face sweeled. It was the worst thing I have ever experienced and to this day, I always watch what I eat, stick to the same diet and try not to change anything.

    I now have a major issue since I do believe that this was part of it. Back in 2001, I was always into dyeing my hair jet black and there have been studies of the carcinogen DHT in black hair dye. I have stopped using black hair dye and have now switched to no silicone, non permenent washable dyes in Brown. I also had the first cavity of my life and had an Amalgam filling inserted. This filling is now about to be removed next week but I am having a real big issue with the compositie that it is going to be replaced with instead.

    Does anyone know what composite is safe as a replacement for Amalgam?

    Some more info: I have also gone on a special diet that has really helped. It was done to my blood type and has worked wonders.

    I am still severly allergic to cats, dust and grass and will suffer at certain times of the year but they are under control. I also am very careful with alcohol since I will have an outbreak with more than 1 or 2 glasses beer or prosecco. I try to avoid red wines because of the sulfites and don’t eat any shellfish at all.

    This next trip to the dentist is really making me worried. I am not sure if the stress of the removal of the filling along with the adhesive glue and compositie will tip my system over the edge again.

    Any Ideas?

    Thanks

    Reply

    • Posted by Martine on February 21, 2014 at 12:13 pm

      Hi Cat!
      Happy to hear that your CU is under control. What medications are you currently taking? I have been on Prednisone for a month now, & the side effects are awful (weight gain, moon face, sweeling, mood swings, insomnia), so I am trying to get off asap. I am also taking 300MG Ranatidine & 10 MG Certirizine, which doesn’t seem to be working because I have experienced minor breakouts even after taking them.

      In reference to your questions about your tooth, I would recommend the almalgam based on the attached article I found, plus from experience. Not only does it look better esthetically, but I don’t feel comfortable with having anything that resembles “metal” in my mouth. Like you, I was concerned that there may be a link with my flare ups, so I’ve started removing the composite that I had before & replace them with amalgam. Its more expensive, but safer.
      Hope this helps!

      http://www.deltadentalins.com/oral_health/amalgam.html

      Reply

  68. Posted by Cat on February 21, 2014 at 2:38 pm

    Hi Martine Thanks for your response. I was actually asking about replacing my 13 year old Amalgam filling with Ceramic now but I am extremely worried about the bonding materials in the glue. I am very nervous that the glue/composite materials will put me over the edge again and cause hives gain when I have finally become hive free after so many years. It is the Amalgam that is the problem since it contains mercury and I want them out. How it is that we must take care of touching anything that contains mercury but we proceed to put this stuff in our mouths? My filling was done in 2001 the same exact year I got my hives. It was the one and only filling/cavity dental work done in my entire life. I believe that there is a correlation.

    Re drug combos, I would stay away from Prednisone and others such as Doxepin. They cause so many side effects. The ONLY combination that worked for me was the higest dosage of Allegra during the day (start with 180MG and you can also get higher in the 200 range – wait for it to take effect) and then at night the Hydroxizine (for me 25mg worked). I even stopped the Allegra and only used the Hydroz at night for about 1 year then proceed to quite everything cold turkey. The hives have not returned.

    I noticed more intense hives during my period and got my hormones tested. There was nothing too unbalanced. I started PREMENS for other reasons but this is not a drug more of a supplement only avail through my GYNO. I believe it has also helped.

    So good luck with everything. I will always have this condition and have accepted the fact. When I have a hive free day, it is a very good day. And all DID get way better for me in the end. I am so incredibly thankful for that. Now I have to keep it that way.

    Reply

    • Posted by Martine on February 26, 2014 at 11:42 am

      Hi Cat,
      Monday, I had a severe attack of the hives. They were all over my upper torso, neck, face, etc. They caused so much inflammation (edema) that I couldn’t bear having a bra on. Even with all the pain & discomfort, I refused to take the Prednisone, so I took an Allegra 180MG & Zyrtec 10MG in the morning (7AM), then played the waiting game. It took a lonnnnnnnnnnnnnnng time, but the hives finally started to subside in the afternoon (4PM-5PM).
      I went to see my doctor right after I took the pills & informed her that I didn’t want to take the Prednisone anymore. Of course, she tried to convince me to stay on the regimen, but I stood my ground! I am 204 lbs now, & my face is so big that my eyeglasses look like they belong to someone else. GRRR
      She replaced the Prednisone with Doxepin & Azarthioprine- a drug that people take after an organ transplant in order to suppress their immune system so their bodies won’t reject the organ. I’m thinking: what is this supposed to do for me?!?!?
      Well, there goes another drug that I am NOT going to take. However, I must say that the Doxepin & Ranatidine at night works well cause I wake up with fewer hives in the morning.

      Maybe I’m onto something here. Lets hope & pray.
      So, to recap, Allegra 180MG & Zyrtec 10MG during the day, then Doxepin 20MG & Ranatidine 300MG at night. Thats the cocktail that seems to be doing its part. Its only day 3, so I will keep you posted.

      Reply

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  70. Posted by Martine on March 22, 2014 at 9:51 pm

    Since I last wrote, much has happened. Unfortunately, the Allegra 180 MG, Zyrtec 10MG, & Ranitidine 300MG stopped working, and I had another severe attack. I went to see an allergist & the visit was quite interesting. The first day I saw him & started telling him what ordeal I’ve been going through for the past 2 1/2 years, he proceeds to promote a “new drug that isn’t so new”, Xolair. I had to interrupt him mid-sentence & asked him to first diagnose me before trying to shove another pill down my throat, so I did all of the testing, and everything was negative. I even had extra testing done like my thyroid and metals, but still everything was negative, so the allergist ordered more testing, but I am certain that they are also going to be negative.
    CIU is definitely a mysterious ailment. Even the allergist that have been practicing for over 30 years seemed dumbfounded by my story.
    Since seeing the doctor, I was able to go 3 days without taking any meds, but one morning I woke up & there the hives were on both hands, feet, knee, & thigh. So, again, I am taking the Allegra, Zyrtec, and Ranitidine.
    It is frustrating, but will not give up on finding either a cure or a treatment that keeps the outbreaks away.
    To all of you suffering with CIU, I pray that you keep your head up. I know its tough, but hang in there. This blog that Lyndon started is a God send for people like us. Gives us a place to share our stories, failures, and successes with dealing with CIU.

    Reply

  71. Posted by Martine on March 30, 2014 at 8:32 pm

    Hello everyone,

    I have a concern. I notice that as of late, I’ve been swelling all over my body. Sometimes, whether I have visible hives or not, I notice that my hands & fingers, arms, legs, feet, or face may be swollen, especially in the morning. I do drink a lot of fluids (water, tea, juices- homemade) everyday, but I empty my bladder regularly. I don’t know, but it seems as if I am retaining water. Did any of you experience or have experienced this?

    Note: I have been off the Prednisone for almost two months, after taking it for a month. Also, I am taking the antihistamines like Ranitidine, Zyrtec, & Allegra.

    Please help.

    Reply

  72. Posted by Martine on April 19, 2014 at 8:06 am

    Hello everyone,
    Since I’ve last written, my outbreaks haven’t gotten any better. In fact, I have swelling & pain associated with the outbreaks. The allergist I saw in March spoke to me about this medication called Xolair. Usually Asthma sufferers are the ones who are prescribed this medication, but the doctor explains that it also works to get rid of hives. Has anyone taken this medication before?

    Reply

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  74. Posted by Christie Burger on June 16, 2014 at 7:24 pm

    Lyndon – I found your post so helpful. I know it was posted a long time ago. Could you update us to see how you are doing now. Is the protocol you gave working? I would really appreciate your feedback. Thank you.

    Reply

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  76. Posted by Martine on July 22, 2014 at 2:13 pm

    Hello everyone! I haven’t seen any new post from Lyndon or others CIU sufferers, so I’m not sure if this forum is being followed, so i will keep my message brief.
    Since my last entry in April 2014, I have been having outbreaks almost daily. I continued with the histamines (Zyrtec,Allegra), but they seem to stop working. So, I resigned myself to take the Prednisone. I finally decided to return to the same Allergist I saw in March, & he immediately took me off the Prednisone. He was concerned about me developing Diabetes, or the other conditions taking Prednisone long term can cause.
    He recommened that I take 1 or 2 Zyrtec during the day & 1 to 4 Hydrixyzine HCL 25mg (I have to adjust to see which dose works). The first 2 days were awful. I’d wake up to hives all over my face (esp the eyes & cheeks), ears, neck, & chest. Last night, I took 2 Hydrixyzine HCL, & today I woke up to NO hives. YAY!!!! I am guessing that I got the dose right: 2 Zyrtec during the day, & 2 Hydroxyzine HCL at night.
    Since being off the Prednisone, I feel much better. I have more energy, my moods are better, I feel less depressed, & my appetite is starting to come back to normal.
    In the meantime, I applied for the Xolair, & hope that my insurance will cover it, because each shot is $800!!
    I’m not sure if anyone is taking Xolair. I’d love some feedback if anyone has. Also, I’d love to know how everyone here is doing.

    Looking forward to some feedback. :-)

    Reply

    • Posted by Cat on July 23, 2014 at 10:58 am

      Yes, 180 mg Allegra/Telfast (up to 230) during day and 25 mg at night Atarax (Hydroxyzine) was the only combination that helped me through that awful phase and I tried everything. When I went to do a scratch test, they could not even determine what I was allergic to because I was so broken out from head to toe. Countless ER visits with Epi shots. Thankfully, I am hive free now for about 3 years (taking no meds now) and I dramatically altered my diet. Cut out all alcohol as well and if you must, keep it to 1 or 2 drinks max. Wishing you the best.

      Reply

      • Posted by Martine on July 30, 2014 at 5:43 pm

        Hi Cat,

        Nice to hear that you’re doing well.
        Today makes it 11 days since I’ve been hives free. YAY!!!
        I have been taking 1 or 2 Zyrtec during the day & 2 Hydroxyzine at night seems to be doing it, & I pray that it stays that way.

  77. Posted by ann bragan on July 30, 2014 at 5:02 pm

    My husband is taking xolair. He gets 1 shot a month. Worked great for 3 months. Now only keeps the hives away for about 2 weeks. He is at his wits end.

    Reply

    • Posted by Martine on July 30, 2014 at 5:56 pm

      Hi Ann,

      I’m sorry to hear about your husband.
      Maybe he can try my regimen: 1 or 2 Zyrtec during the day, & 2 Hydroxyzine (50mg) at night. I’ve been hives free for 11 days now, so it seems to be working.

      I’m waiting for my doctor to get back to me about the Xolair, so in the meantime I am enjoying my hives-free days as much as I can.

      Wish you husband the best of luck!

      Reply

      • Posted by ann bragan on July 30, 2014 at 6:13 pm

        Hi Martine, my husband has been on all different combinations of meds over the last 5 years we’ve lost count!!! He is in the middle of his worst flare yet, set off from riding an exercise bike yesterday. He is on 720 mg of allegra daily plus a zyrtec at night. In addition to the hives he gets totally wiped out. He’s been sleeping all day. H I s allergist thought the xolair would be the magic shot,but it’s not really working. I think he is going to try a fast followed by the supplements on this forum plus the Apple cider vinegar. We really don’t know what else to do.

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