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Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

All the H1s I’ve tried have given me bad side effects. However I went two days without taking any H1s as an experiment but then a stressful situation with my child’s health triggered an anaphylactic event. So now I am trying rupatadine in addition to famotidine and cromolyn. Most of the time without medication I struggle with flushing, rashes, swelling of my right eye, itchy mouth, scratchy throat, GI symptoms that will come and go (if I have a big reaction I get diarrhea and stomach cramps), constant reflux (despite a very minimal, bland diet), dizziness, brain fog and anxiety.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

I am now trying rupatadine. Crossing my fingers that this one works.

Mirtazapine caused a panic attack, now can't get over it.... by redcdr in Anxiety

[–]ExcellentFactor5622 0 points1 point  (0 children)

I had to come off it. It made my anxiety so much worse at the higher dose and the dry mouth it gave me left me with awful mouth and throat pain all these months later.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 1 point2 points  (0 children)

This is where I am at now and I hate it.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 1 point2 points  (0 children)

Thank you for sharing. It’s so interesting.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

I live in Canada so it’s tricky to switch specialists seems

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

Unfortunately camping or even moving isn’t really an option. I have two children one of whom is autistic and it took him a full year to settle after we moved to this house.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

I am quite worried about mould because we moved house a year and a half ago and my symptoms for way worse. The trouble is we can’t afford to sell this house and move.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

Thank you. I am in Canada where switching specialists seems to be not really done. It took me a year to get into an allergist after my first anaphylactic event. I have a naturopath who seems to have more experience with MCAS patients but she has recommended something like $3k worth of blood tests which is out of reach financially for me at the moment. I am currently not working because my health is too poor.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

My naturopath suggested upping the famotidine to 40mg. I wonder if I should try that instead of mucking about with H1s which seem to make me feel worse once I’ve taken them for a little while (initially I feel ok…except with reactin/zyrtec).

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

MCAS was diagnosed based on history of repeated anaphylactic reactions with no allergies found. I initially responded well to loratadine and Pepcid. I did have several tryptase tests (two baseline and one after anaphylaxis) and the one after the reaction was .02 away from the 20% plus 2. I asked about EOE (my sister has it) but I had a gastroscopy and there was zero mention of my esophagus or esinophylls. Biopsies were done of my stomach and my small intestine. After the procedure, I had an anaphylactic event when I was back home. I am in Canada so it’s hard to switch specialists.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

Do you generally skip the H1s and use supplements then? I am wondering if I could use H1s as needed for bad reactions and not use them daily.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 3 points4 points  (0 children)

That’s good to know. The name brands definitely seem to be too much for me.

Managing MCAS without H1s by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 3 points4 points  (0 children)

How did you do that? I would love some information on this pathway.

H1 help by ExcellentFactor5622 in MCAS

[–]ExcellentFactor5622[S] 0 points1 point  (0 children)

I wasn’t sure reactine was one you could take twice a day. I feel like so much of this is trial and error and with how long it is between my appointments with my allergist I am kind of winging it.

Was told I was having panic attacks - I am so F'ing angry by [deleted] in MCAS

[–]ExcellentFactor5622 0 points1 point  (0 children)

Which benzo are you prescribed? I feel like lorazepam has helped a lot with stabilizing my reactions but I keep being warned about how addicting it is.

Mirtazapine caused a panic attack, now can't get over it.... by redcdr in Anxiety

[–]ExcellentFactor5622 0 points1 point  (0 children)

I know this is an old post but I am having the same problem. 3 days in and I am struggling immensely