H1 + H2 Combos For Mast Cell

[k&ajsmom]

So ive been on zantac 75mgs before breakfast and dinner for 3 weeks, claritan forever lol and added nasalcrom 2 weeks ago. I feel no improvement yet. Ive also cut out artifical sweetners and alot of carbs.

Am i being impatient or should i be having a slight benefit by now, isee absoluely none =(

Any suggestions on other combos that you have tried or do i just need to give it more time?

And i see alot of u take benedryl, is this is combonation with another antihistimine.

[Christy_D]

Unfortunately, so far the H1 and H2 combos aren't helping my son yet either and he has been on them since last May. We are just working our way through the long list of medications for MCAS. He is currently on Singulair which we've noticed him being a bit more social, getting out of his bedroom more. While he still feels horrible, I think he feels a step up from terrible. It has only been a couple of weeks on it.

[Kellysavedbygrace]

Before seeing a mast cell specialist I tried Zyrtec and Zantac- regular strength. I saw no improvement. After seeing him he suggested I try Claritin (10 mg2x a day) and Pepcid (40 mg 2x a day.) After this change- not only in drugs but also amounts (equating to double and quadruple dosing) I saw significant improvement on the days when I'm doing well - less brain fog, less fatigue, but when I'm crashing, I'm still crashing- so I know my dosing is not quite right. And I'm trying to add aspirin, a Prostaglandin blocking agent, but got really sick on. Baby aspirin-81mg (bc it causes mast cell activation- so Ive found a compounding pharmacy to make it in a 10mg form and am trying to get my body to tolerate it. Jury is still out on that.)

Today I'm having a really bad day. Have been in bed all day, can barely stand, all the symptoms on full tilt. on days like today I take a third dose and add a dye free benedryl. It helps a little but only time in bed helps me recover from a crash. Hoping to find more improvements.

[brethor9]

Hi

I was told by my specialist that it can take many months to see improvement when starting the MCAS treatment.....his words were "it is a long a difficult journey" mainly because every presentation is different......what works for me may not work for you so the meds have to keep getting tweaked. The gastrocrom in particular I was told could take up to 6 months before any improvement and that I would feel much worse when initially starting it. I take benadryl mainly for breakthroughs....I also take zantac, claritin, gastrocrom, lorazepam and sometimes aspirin. Hang in there!

Bren

[Katybug]

I'm on Hydroxyzine (h1) and high dose cimetidine (h2 - brand name is Tagamet but dose I'm on is prescription) . They work for me to some extent but recently I've had a lot of break through rashes so we might need to up my dosage. I do use benedryl to supplement when necessary and also as a sleep aid as I can't take any sleeping pills (night terrors) . My geneticist also wants me to talk to my immunologist about taking GastroCrom so we'll see where that goes. My immunologist also wants me to receive Xolair shots which are expensive and not approved for MCAD but have apparently anecdotally have been used with some success. I am super reactive to lots of things and getting worse/adding allergies all the time. He wants to suppress the part of my immune system causing the allergies so we can then treat what's left of the MCAD. it's like I've got the double whammy with classical allergies plus MCAD.

[k&ajsmom]

Hi guys, thx for your responses,

Christy, so sorry its not helping yet with your son, but from others I geuss it just takes time. I tryed singulair years ago and my doc took me off cause it was causing more freqeunt runs of pvcs, which is a shame cause it was great for allergies and asthma. Im glad singulair is helping him even if its only a little bit, thats omething. Hang in there and good energy to your son

Kelly, so sorry ur having a bad day, hope ur up an about soon =( I was on zyrtec but I thnk it was causin some added tachy so I cut it out a few weeks ago and stuck with just the claritan. Was on it for years though and it was great till pots hit me. Ive heard of usuing aspirin but my doctor years ago told me not to take it causes tachy and itchy allergic symptoms in me. Im always nervous to take too many antihistimines but maybe I need to up my dose a bit. My doctor said I could but I dont always listen to him lol I tend to listen to you guys a bit more through experiences...lol I just bought a new bottle of zantac so Ill stick it out for a bit longer and try upping my claritan. So I am undertsanding correctly, it is ok to take benedryl and claritan even at a higher dose together??? This is good to know...sometimes I just dont have the right questions for my doctor...=P Feel better soon =))

Hi Bren, well I geuss your doctor called it and I have to be patient...blahh lol Im waiting on some insurance to kick in and Im going to inquire about gastrocom with a specialist but till then Im trying nasalcrom and it actually flares my allergies everytime I use it. Geuss thats normal though according to the side effects. Thanks for response I feel alittl ebetter knowing theres stil hope I just gotta....wait =P Take care

Katybug, like you Ihave aweful allergies. My job exposed me to almost everything I am allergic to (owned a cleaning company yuck) so Its hard to differentiate all these symptoms. It sounds like you have a smart doctor. Mine, when I asked him if antihistimines could help pots or a cause of it....said absolutely no thats a placebo effect in your head.. lol so patiently I wait for my specialist and try to figure it out on my own...gahhh

What kinda of doctor do you see for mcas/mcad...I have a autonaumic neurologist appointment in June, but till then I thought Id see someone about mcas and get some tests done while Im waiting.....an allergist??

and if you guys dont mind...one more qeustion lol promise last one

what seems to be your triggers? Im trying to find some of mine but other than obvious ones (food) I dont know where to start??? or do you even have triggers??

Thx so much ladies...{{hugs}}

[Christy_D]

My son see's Dr Afrin, oncologist/hematologist. We also now have a local oncologist/hematologist to work with Dr Afrin so we don't have to travel as much.

As for triggers, we have never been able to figure it out. Dr Afrin said some patients will never be able to figure out what causes their issues. It could be our local environment since he does better sometimes when we travel. He did really great at the Mayo in Minnesota. Dr Afrin said some patients have to relocate.

[brethor9]

same as Christy triggers are different for everyone and can even change from one day to the next......fun right? and I have the same specialists plus I am lucky enough to see a local internist/oncologist that I used to work with who oversees everything. Hang in there.....hope you start to get some relief soon

Bren

[Dizzysillyak]

Me, too. I'm working on when and what meds to take. Wal-zyr, benadryl and now nsaids are a given.

I'm working on which h2s to take when.

I figured out a lot of my triggers before learning about mast cell disorders. I'd start with eliminating

common food intolerances like gluten, dairy, soy and corn. These are in most of our foods so we're

getting too much of these. Btw, even newspaper ink has soy in it.

I'm intolerant of all 4 so this made a huge

difference for me symptomwise. Later I discovered that my fibro pain only came back if I ate tomatoes

or bacon. Some nuts are a problem but not all. To this day, 7 years later, these foods still trigger whatever symptoms they did originally.

It took me several years to feel the full benefits of this but I'm also a celiac who appears to get ataxia and seizures from gluten.

I don't know why the low histamine diet that's recommended for mc disorders allows some of these..

Tc .. D

[brethor9]

wheat, dairy and tomatoes are a big trigger for me although I am not celiac (ruled out by biopsy) I definately have big issues with wheat. It causes instant back pain and leg cramps within a short time of eating it....so strange.... be warned it isn't always typical allergy symptoms....like Dizzy I have realized a lot of pain was being caused by reactions to things

[k&ajsmom]

I geuss Ill start with some in depth allery testing and then try not to drive myself crazy looking for triggers. It in a wierd way makes me feel better that I may not know some of them. I get a little manic, scared to eat anything cause of how Ill feel after. I can eat something one day and be fine and then the next it makes me terriably ill. I was confused to say the least.

I live in hampton roads Va, which there is a local dermatitis and fungal thing called the hampton roads crud...lol medically speaking of course. Alot of people have allergies and skin issues that some doctors chalk it up to. Weird, Ill have to look into it a bit more.

Thank u guys for your help, I learn so much more from you guys than I do from hours trying to research it elsewhere.

Im gonna tweak some of my meds and research some local doctors...thanks again =))

[diamondcut]

I have just started Gastrocrom myself, and its making the nausea bad about an hour after taking it, this can be worse when you eat too, BUT there is a massive difference in my heartrate when going to bed. Its really come down and whats amazing is its doing it without causing any pvc's. So i am sticking with it. I think Gastrocrom and my H1 blocker is startig to help my migraines as i up the dosages.

[Kellysavedbygrace]

Diamond, that is great news. So glad to hear.

Christy, Did I mention to you that I also tend to do better when out of town?

K&A, My doctor told me that the doses I was taken were well below toxic levels and encouraged me to adjust and use more if symptoms broke through.

Like this thread.

[Katybug]

I see an immunologist for both my MCAD and my allergy issues. As far as triggers go : overeating,, eating too much protein in one meal, exercise, hot weather and or heated environments (but it can't be too cold either or I have autonomic issues then) , grapes, bananas, avocado (can't even use the oil to moisturize my skin anymore), uncooked bell peppers, cilantro. I am sure there are others but I haven't figured them out yet.

[k&ajsmom]

diamond, gla dto hear gastrocrom is helping, thats encouraging, sorry it makes ya nauseated though, its always something. I also find it interesting your pvc's dont increase when your hr stays down, this is something that bothers me greatly....def. worth talking to a doctor about. THx for sharing

Kelly, thx, i think i needed to hear that. Im always so worried about meds and dosing and reactions. I increased my zantac today, we shall see...atleast I wont have any heartburn lol

Katy, Geeshh...so basically this is going to be a tidious investigation...I really do need to try to pay even more attention to what im eating. Its an overwhelming task to get started when youve never really thought twice about what ya eat....

Thx =)

[Angela]

I take whatever h1 and h2 is cheapest on sale, 2x per day taken together at the same time. I was on a mcad forum and read that works better. I didn't notice much improvement until about 1 month after starting. I began only taking the h1 in the am and the h2 in the pm to start, and increased it a couple months later. I also take generic clonopin. What I think the h1's and h2's help me the most with is noise/vision issues, tinnitus, and tingling numb electrical feelings in feet and hands. when I forget to take at night occassionally I notice I feel worse the next morning.

[k&ajsmom]

Angela, you have my motto for choosing which one initially to take...".hmmm...that one is on sale and hey I have a coupon " Moneys tight so Im gonna stick with upping doses and being consistant with it before I switch. Im glad its helping you, even if its a little. I think if it would just calm my heart down I would be a happy camper.

[Angela]

maybe try taking them together? that's when I noticed the biggest diff even if you try to do half of each pill at a time morning/nigh or whatever. but i never thought i had allergies, it's so weird for me to be on what I considered allergy meds.... since pots and after going on mcad forums and seeing how similar symptoms were. but it has seriously helped! I mean, at least I am not going to er or callin 911 right now. wasn't the case before that, for me. and i find it interesting that it is now what mayo is prescribing out here (antihistimines and gastrocrom, which the latter I do not currently take)...hope it was ok to say that about the mayo....even tho i dont go there i have respect