So, apparently I can post my reply if I break it into separate posts. Don't ask me why; we cannot figure it out....So, here are my thoughts on this discussion: In the previous discussion (you can look it up in this category), there are a lot of abbreviations being used in this thread that most of us are not familiar with. Therefore, not a lot of people will be able to comment here. It would be better to write out the full word at least once in the post with the abbreviation beside it, such as "Idiopathic Anaphylaxis (IA)". I don't have any idea of some of the things you are talking about due to the abbreviations, and I am the forum owner....

Basically, the key to feeling better with mast cell disease is determining which antihistamines and what combination of those meds to take. I went from being unable to get out of bed, unable to eat for 4 weeks, and constantly going into anaphylaxis to feeling great and only having a minimum of symptoms. It is mainly due to taking basic antihistamines twice a day, avoiding triggers, and adapting my lifestyle to reduce triggers. It really works.

I know how easy it is to feel negative when you are feeling poorly. My whole attitude changes when I get really sick from my mast cells. However, let me assure you that the things I have suggested will help alleviate mast cell symptoms. If you would like to tell us what meds you tried, we are happy to offer suggestions about them.

Brigitte,

I feel like yours could be an easy fix. Without knowing what your exact symptoms are, I will assume that it is the standard ones. Since you haven't felt well for months, you need to tinker with your meds. Clearly zyrtec doesn't bother you. I would say that you simply need to take more meds right now. While antihistamines may work for "normal" people for 24 hours, they don't for us. Think of them as a half day medicine. So, you are correct in thinking that you should take zyrtec in the morning and evening. (I actually take it around 4 pm rather than evening so that I can be awake during much of it's beneficial effects.) Years ago, Dr. Akin found that his patients did even better by taking an allegra in the morning and a zyrtec in the evening, rather than 2 zyrtecs per day. You could also try that (that is what I take).

Another question to think about is do you need a zantac twice a day? Currently you take it once a day, but most of us take it twice a day. If you have any GI issues at all, then you should be taking it twice a day. Even my 13 year old son takes zantac twice a day for acid reflux! So, clearly it is not a 24 hour med if the pediatrician has my child take it twice a day.

Hope these ideas help!

Thank you Deborah! Ya, I've been very "active" lately. I actually got hives the other day. Haven't had that in a long time.  I will try taking a double dose. I've played with allegra now for three years, and I don't thin it's for me. It makes me feel weird. So I think I'm going to try two Zyrtec. Do you think this is ok? I seem to tolerate much better.

Hi Deborah! So when you're not triggering, do you only take an antihistamine in the am, or do you take a Zyrtec am, Allegra pm, and then add another Zyrtec to that when you're triggering?
I'm working on getting back to Boston. I called to find out if having a confirmed diagnosis of autoimmune urticaria was criteria to see one of the doctors. I left a message for the nurses. Unfortunately I missed er return call, but it sounded like I would be able to be seen. Hopefully this summer! Do ketofin and or gastrocom make a big difference in mast cell symptoms? Or is the biggest target to find the right kind and amount of antihistamines? (Or both?) what do ketofin and gastrocom actually do?