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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> advice with choosing next medicine... most beneficial? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1387228236 Message started by kesasur on 12/16/13 at 09:10:36

Title: advice with choosing next medicine... most beneficial?
Post by kesasur on 12/16/13 at 09:10:36

Well, howdy.

I saw my Allergist/Immunologist again. I reported that I am "stable" as far as being able to tolerate the few foods I'm eating- most of the time. Reactions might come after too much beef or just because I'm at a more hormonal place in my monthly cycle.

Reactions are a bit easier for me to feel coming on and I've been successful in keeping myself from terrible GI symptoms and mostly my symptoms have been "mild/moderate" neurological more than anything else (some vertigo, increased ringing, fatigue, weakness, mental fatigue).

I'd like to *try* to add some food back to my diet, even simple things like apples, blueberries (I live on a u-pick blue berry farm!!!), zucchini. Dare I even hope for milk???? Oh how I miss cheese and butter.
However, I also want to be content and thankful for what I can eat if my body simply says "no".

I'm currently taking: Allegra 180mg twice daily (more as needed).
I'd like to work onto zyrtec at night...but wondering if the lactose would be an issue.
I also take Benadryl as needed (I can tolerate the pink generic pill- even though they have corn starch... go figure that one?).
Gastrochrom full 8 vials/day.
Maxair inhaler as needed
Zoloft 25 mg
.125mg of klonapin

I've asked him about Zantac. I forget why he doesn't think this would be effective.
We've talked about klonapin, I mentioned Dr. Afrin's input regarding clonapin and mast cells and he hadn't heard of it being helpful for the mast cell itself, but rather for the anxiety surrounding the reactions. Hmmm.
Okay, today I asked what is the next step:
I asked about Singulair, which he didn't think would be as effective.
I mentioned it is often listed as treatment in the "drug lists" for MCAD and other's have had it be very effective.
He suggested Periactin at bedtime.
Now this is interesting to me because we took my son to a GI specialist for "failure to thrive" (no answer found...) who suggested periactin- originally used as an antihistamine...but not found to be as effective as hoped but wonderfully helpful in stimulating the appetite.

Okay, I'm not really worried about the weight gain...I'm still down 10lbs (but up 8!!) from my "original weight".
But my thought here is this: if my appetite is up, the antihistamine effect isn't great (another H1) and we are not covering another area (H2, leukotrienes, etc.) and I am only eating 10 foods... OH MY!!!!! Suddenly I'm consumed w/ eating tons of food again, consumed w/ mammoth amounts of food preparation, and - okay, maybe there would be the benefit I'm looking for.

HE agreed to prescribe me both Singulair and Periactin but advised try ONE and not both. See how it goes. Try the other if not helpful.

Thoughts on this?? Please, I really would love to hear what has helped, worked, and what seems like the next logical step for me in this.

Thank you!
Kelley

Title: Re: advice with choosing next medicine... most beneficial?
Post by zippy890 on 12/17/13 at 04:04:50

I have no advice Kelley. Sorry. But I just counted my foods, and I have only 10 also. I'm really only good on about 7 of them, however. So, I sympathize.

At one time, I had only 3 foods. :(

I'm still ramping up though. No formal diagnosis, and likely not yet well medicated either. Hopefully, things will get better for both of us.

Todd in Tenn.

Title: Re: advice with choosing next medicine... most beneficial?
Post by kesasur on 12/17/13 at 06:26:43

I hear ya! I was at 3... so anything is an improvement! ;D

I hope you can find the help you need too!