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 C. Even 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!