Hello everyone! Well, I have been quite absent from the forum, and I apologize for that. It is due to the good fortune of just being really busy being mom (the job I love the best!). I wanted to share my news, though: I have been able to reduce my meds and am feeling absolutely no negative effects! In fact, I have a lot more energy now, which I presume is a result of eliminating an antihistamine.

This is a huge milestone for me, and I am cautiously optimistic about it. I keep waiting to feel sick and I have been much more careful in what I am eating (because I am easily triggered by food). As a reminder, my mast cell condition is officially classified as Idiopathic Anaphylaxis, which falls under the Mast Cell Activation Syndrome category.

I had not intended to reduce my meds; it was actually an accident that I decided to turn into an experiment. Recently I actually forgot to take my morning meds! I generally take them at 6:30 am when I am getting my kids ready for school. I realized at 11 am that I had not taken them and was feeling fine, except for the slightest heartburn feeling. The meds I take in the morning are 150 mg Zantac and 180 mg Allegra. Then at 4 pm I take my evening meds: 150 mg Zantac and 10 mg Zyrtec.

So that morning at 11 am, I was about to take my normal Zantac and Allegra when it occurred to me that since I felt fine, maybe this was the perfect opportunity to experiment. I took my normal Zantac then, but decided to skip the Allegra. Then I decided at 4 pm I would take my normal Zantac and take the Allegra instead of my normal Zyrtec.  I knew Zyrtec has a reputation for making some people fatigued and sleepy. I had never felt that it affected me that way, but I was curious to see what my experiment would bring. So, I did just that.

It's been about a week so far with my experiment going. Morning I just  take Zantac and late afternoon I take the Zantac and Allegra. So far so good I am happy to report. Even better is that I guess the Zyrtec was making me fatigued because I have a ton more energy and just don't feel sleepy and exhausted by evening as I used to.

I wanted to try this experiment now because I knew that right now is a low stress time in my life. I don't have any appointments, travel plans, etc that can cause me stress (which is one of my biggest triggers). So, the next step will be to see how I fare on the limited med during stressful times!

A word of caution: while I am excited and want to share my news with   you, I don't advise people to throw their meds away and give them up. I do think that I am one of the lucky ones in this situation, but I don't think it is common. So, just because I am trying this does not mean that everyone should. I have learned to control my triggers very well as preventative means, so that also enables me to reduce my meds.

I am hopeful that my experiment continues to work and that my symptoms fade even more away. Time will tell, but it goes to show that just because you have mast cell disease does not mean that it will be active forever. You never know.....

That is great news!  I hope this will be a permanent change for the better!

I also have cut back on my meds and can do it as long as there's little stress and no allergy triggers, since I have IgE allergies, too.  I don't know if Zyrtec is more sedating for me, but Allegra is definitely more energizing, so maybe it is.  Turmeric/bromelain capsules seem to help me be stable, too, but anyone wishing to try that should check with his/her doc first.

One thing to add, for those who don't know, there are 60 mg. and 30 mg. Allegra, and Zyrtec can be split.  (180 mg. Allegra can NOT be safely split).  There are also lower dosages of H2 antihistamines.  So, some people might want to cut back their dosages over time to see how they do rather than cold turkey.

I've also been gone a lot (due to a family illness), but as that improves, hope to be here more often.

uh-oh!
Joan, why can't 180mg of Allegra be split safely???
I'm not able to swallow pills that big so I split and take 2 halves. Tastes a bit bitter but other than that I've not had any problems....that I know of.  

Kelley

I only take 180 mg of Allegra. I don't think it is wise to cut meds that last for 24 hours in half....I don't know the answer go your question regarding smaller dose Allegra. Sorry. I have found the cheapest place to buy Allegra is Costco. I bet SAMs Club is the same if your aren't a Costco member. It might be worth joining costco, though, to save that much on meds. I get my Zantac and Zyrtec there for a lot less also!

Why do you all take different meds like allegra at one time of day and zyrtec at another time of day..what is the significance of this??

I know that the original post was last year, so I'm kind of late in commenting but...

First off, I'm really happy for you!

Secondly, this gives me a little hope. My greatest hope is that I won't have to be on tons of meds forever. It seems that my helter-skelter method of dealing with this disease (not knowing what it was) has caused my gut to get much, much worse at absorbing things over time. I'm hoping if I can get on the right meds for a while, it'll give my gut a chance to heal itself, and eventually maybe I'll be able to cut back (or even just get along with diet restrictions and natural supps like quercetin).

Of course, at this point I haven't even gotten far enough along in my journey to have found the meds that enable me to be functional, so I may be getting ahead of myself just a bit.  

But still, thanks for sharing your good news and giving a newbie like me hope.