I have tried several H2's, zantac, pepcid, tagamet.  I don't notice much except maybe it helps decrease the incidence of heartburn in concert with my PPI?

Claritin - nothing

I haven't tried Allegra yet.

If I discontinue the Hydroxyzine HCL, my bladder pain becomes unbearable as I seem to react to various foods.

So, Hydroxyzine HCL seems to be the only med with obvious benefits for me. I need to be on this pill daily, or else symptoms start up.

Unfortunately, taking this pill is causing increasing side effects the older I get:  forgetfulness, drowsiness, tiredness, increase in restless leg syndrome symptoms.

I am caught between a rock and a hard place: I can't live with the Hydroxyzine HCL, I can't live without it.

Question for forum members:

Is there a med that you know you have to take on a daily basis, or else your symptoms increase? Is it obvious that if you stop the med, you get worse?  Does the said med cause you side effects?  If so, what are they?

I feel like I have to turn into a walking, tired zombie so that I can live pain free.  This is not fun....being reactive to many foods and finding that the only help is causing me uncomfortable issues.

I want to see if anyone else has to "put up" with a medicine on a daily basis that causes them side effects?

Thanks in advance.

So Deb, are you saying that it is okay to stay on the Hydroxyzine HCL while I am trying the Allegra?  IOW, I can be taking both at the same time?

I do have the Allegra in the house, as well as Xyzal (which is like zyrtec).

I did not know that I could remain on the Hydroxyzine HCL while I was trying the Allegra?!

Thanks so much for giving me your ideas.

Yes, I frequently have stomach pain as well as bladder pain. I have both.

I agree with Deb.  There's no harm in trying a different H1 like Zyrtec or Allegra (either one is an excellent choice).  If it's not helping... and you still need hydroxyzine that day... just add it back in.  You won't overdose.

Personally, I take 4X the normal dose of H1s on a daily basis... a mix of Zyrtec (day) and Benadryl (night).  Claritin works well for me too, but some mast cell patients find that it's not effective enough.  When I have a flare or I need to pre-medicate... for exercise, travel, etc... I've taken as much as 3-4 doses of H1 on top of my regular dose!  Ditto for the H2s.  The only negative side effect I've experienced is a dry mouth.  You would have to take a really crazy amount of antihistamines to overdose.  It's not like pain medication.

Heather  

The Zantac cannot fix you GI pain all by itself.  It should be helping calm mast cells down, but it needs to H1 meds to assist it. You also might not be on a high enough dose. What dose do you take, and how often do you take it?


Lastly, it is important to note that meds alone will not fix the problem completely. To get to a state where mast cell issues are more of an afterthought, one must change diet and lifestyle to avoid as many triggers as possible.

I'm glad I can help. I mainly offer suggestions when I really feel that it will be of assistance. So, given that, I would say that now that I know you only take Zantac 150mg once a day, then that seems to be an obvious reason as to why you see no benefits. When you are able, I would suggest increasing it to 300 mg twice a day. I still am unclear as to if bladder pain is a result of mast cells because I have never heard anyone mention it. That doesn't mean it isn't! We all have slightly different symptoms just like we all can eat different foods. In fact, don't use the histamine diet as your bible, because it is so individual for people. There are things on that diet I can eat and other things there that would kill me. I kept a food diary to determine my safe foods.

In a good note, with the right meds and lifestyle, your mast cell disease can eat better! Mine has dramatically improved. I am so much better that I used to be; it's amazing. Plus I can lead a near normal life! I am lacking energy that normal people have, but that's okay! I never go into anaphylaxis anymore and I rarely have GI pain (and that was always one of my worst things). I actual think I am doing much better now than ever before, and I attribute it to the basic meds of Zantac, Allegra, and Zyrtec, and my efforts to watch what I eat and to maintain as low stress lifestyle as possible. I think this is achievable by many, and I hope that you get to this level too!

A few things come to mind. First, remember that not just foods cause those symptoms. Environmental things, such as heat or cold cause problems in many. So does stress.

In regard to the headache today, do you live in the US? If so, are you in the path of any of the storms moving across the country? Storms will cause major headaches, so you have to be careful in considering if it is a storm or the Allegra or something else.

You are very welcome! Make sure to come back to this thread and let me know how you are doing with this medicine experiment!

I've never heard of anyone reacting to Allegra, but we are all so different that I wouldn't rule it out.  It could also be that you're stressed about taking it, and the STRESS is causing the headache!  If you can tough it out, I try to give everything at least a week's try.  You often can get past initial symptoms as your body adjusts.  Just don't make yourself miserable.

I take 1 Allegra and 300mg Zantac THREE times a day.  I try to take them a half hour before eating to reduce GI symptoms.  I do notice that occasionally if I haven't eaten in a long time and take them, and then don't eat after a half hour, I can get really nauseous and feel weird.  So, I would recommend food with these things to keep you on a more even keel.  I've noticed the timing of taking them before meals doesn't seem nearly as important now that I'm more stable, I just need to take them three times a day.

Also, I will back up Deb on the surprising fact that the H1 and H2 really do work together.  I found that my urticaria had further improvement from the increase in H2, which you wouldn't think would make sense.  I saw only the slightest GI improvement on 150mg of Zantac twice a day, and it wasn't until I was up on the dose I am now, and on the really restricted diet, that I got any kind of relief from GI issues.   The dose you're on right now, I wouldn't expect it to do much of anything.  The key is to bump it up some and see if you get even slight improvement.   Then you can decide to bump it more.  Again, only change one med a week, and if you stop one, get back to steady-state before trying another.

And that cream cheese and bread will get some added flavor from sliced cucumber!  (That's my go-to lunch these days!)  Snack on a side-dish of sugar snap peas and maybe some rice crackers.

And since misery loves company, I'll share my latest med experiment fun with you: You know I was trying aspirin and initially seemed to be getting some benefit from it.  Well, I started having issues beyond just the bruising: cold numb limbs, hot flashes and chills, and worst of all, difficulty breathing.  I stopped the aspirin a week ago and the doctor put me on a steroid inhaler, but I'm still having trouble breathing with any type of exertion (i.e. walking upstairs) or fragrance exposure.  But you know, this crap happens.  I'm still glad I tried the aspirin because I do think it helped, especially with getting my blood pressure up.  This tells me that I should at some point try a different NSAID.  For now, I think I'd like to try Singulair next, because this latest episode has just brought my long-standing breathing issues to the fore, and maybe we should try to address them.