Cholinergic Urticaria

Anaphylaxis from Cholinergic Urticaria?

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For the past 6 years, my 16-year-old daughter has had episodes out of nowhere of what they are now saying is cholinergic urticaria. It comes on so quickly, and takes over her whole body with a “hot” feeling both inside her body and outside, leading to chest tightness.

We have been giving her the epipen for the anaphylaxis. Does anyone else suffer from anaphylaxis from these episodes? I’m not finding information where people go into anaphylaxis from Cholinergic Urticaria.

She had a reaction two nights ago while in the shower, and was rushed to the ER after receiving the epi pen. Her allergist wants to try Xolair. Any info would be greatly appreciated.

Thanks,

Chris

Comments

  1. Chris,
    I’m sorry to hear of your daughter’s troubles. Yes, individuals with cholinergic urticaria can experience anaphylactic shock if thee symptoms are severe. It isn’t very common (I never had anaphylaxis), but it can and does happen. At least a couple of people on this forum have mentioned having had an anaphylactic reaction at some point.

    Some people here have tried Xolair with mixed results. From memory, it seems at least one or two individuals said it helped, at least one or two said it didn’t. Of course, it does have its side effects, just like all other drugs have their side effects and risks.

    I know it must be extremely frustrating dealing with such severe reactions. I hope your daughter gets well soon.

  2. I had anaphylaxis once when I dived into a cold pool….super hivish way beyond the norm and airway tightened. I know it was terrifying for her and you. Don’t waste time in taking steps to get to the root. Please read Ben’s book and watch the video ASAP. Looking back I was eating a lot of homemade bread and cheese at the time that happened. These are the FIRST things that should go on an elimination diet. While you are studying the book try eliminating wheat and all milk products and there is a high probability you will reduce the allergic load hugely. As a first step this will give you something to help take charge of the problem without relying on the drugs that only treat symptoms. Epi pens are scary too so the sooner you can get away from it the happier you will be. There is a solution and things WILL improve. Don’t despair!

  3. I agree with all of the above. How unfortunate for your daughter but try eliminating dairy from diet. I have cut down as much as I can and I’ve completely noticed a difference in the severity of my hives. I can control them now! It’s worth trying it out. I hope you find a solution soon.

  4. I go through anaphylictic shock alot.. i take allegra and 3 pills of nettle leaf.. it reduces the affect but not a whole lot… i still have chest tightness and all…

  5. Thank you everyone. We have not yet tried any type of elimination diet because we cannot get the right answers from her doctors, we keep getting bounced around. It’s time to take matters into our own hands and try elimination.