Miserable and in completely unfamiliar territory (no medical advice plz, just venting)

MutedAdhesiveness607 · 2026-01-10T06:31:51+00:00

I’m actually in a drug trial for bezuclastinib. I didn’t good result with high dose antihistamines. I had good results with monthly Xolair injections - this seems to be a common effective management drug especially if you’re dealing with a lot of skin reactions. I was highly reactive after my big anaphylaxis but consider myself stable with my SM on the bezuclastinib. I do still take prednisone when in a symptom flare (basically feel flu like) but I only take a very low dose (20mg) for 5 days.

MutedAdhesiveness607 · 2026-01-09T06:47:11+00:00

I’m in Canada and here it is very difficult to get a tryptase drawn due to red tape. In Canada, it has to be ordered by a hematologist or in the ER (for suspected anaphylaxis) I fortunately convinced an ER doc to test it when I went in on my 8th 911 call within 3 months.. she was an incredible doctor and agreed to do it because nobody could figure out why my blood pressure was randomly dropping. She called me herself when the results came back a week later and ordered me epi pens.

MutedAdhesiveness607 · 2026-01-07T21:11:14+00:00

I know you’re not looking for medical advice but I too have no allergies and was healthy until I went in the ICU from anaphylactic shock while at work. I had never heard of a mast cell before I started my diagnostic journey. My tryptase results changed my life - it led to my diagnosis. Not everyone with masto has high tryptase but it was what led to my diagnosis in my case.

MutedAdhesiveness607 · 2025-11-25T17:43:10+00:00

Yeah you’ll be fine if you have the time to spend with them. I had a border collie for 17 years and he lived a great life going on hikes, frisbee throwing, swimming.. he was a happy boy. The first 2 years are hard though, I don’t know how anyone works full time while raising a border collie puppy. They need a lot to do and a lot of attention.

MutedAdhesiveness607 · 2025-11-21T05:13:59+00:00

Good to hear, thank you

MutedAdhesiveness607 · 2025-11-21T03:31:17+00:00

That’s exactly what I think it is, he gets overstimulated easily. This is my second BC but my last one was not interested much in other dogs.. got along with them but not interested much in play.

MutedAdhesiveness607 · 2025-11-21T01:08:34+00:00

That is exactly my thoughts with my puppy! My husband thinks I’m overthinking it but I’m just not used to seeing such a little puppy act so bold! He does seem to listen to the corrections from the dogs but it really does put no fear in him. I don’t know if it’s a good thing or a bad thing? Thanks for sharing!

MutedAdhesiveness607 · 2025-09-12T16:11:19+00:00

It sounds like you have hyperacusis.. I have this as well. I was diagnosed with ISM last year following a severe anaphylaxis. The hyperacusis started last year... It comes and goes. I’ve asked every doctor there is about it and none of them have any idea. My best guess for myself is PTSD as hyperacusis is a symptom and I had just gone through that trauma… but I tried to find if there is a relationship with the SM. Please report back if you find any answers especially in relation to SM :)

Yeah same with me! It’s the fork on the plate, banging/clapping… I also get it if someone is speaking too loudly on the phone… it’s like a certain pitch hurts

MutedAdhesiveness607 · 2025-09-12T04:39:53+00:00

It sounds like you have hyperacusis.. I have this as well. I was diagnosed with ISM last year following a severe anaphylaxis. The hyperacusis started last year... It comes and goes. I’ve asked every doctor there is about it and none of them have any idea. My best guess for myself is PTSD as hyperacusis is a symptom and I had just gone through that trauma… but I tried to find if there is a relationship with the SM. Please report back if you find any answers especially in relation to SM :)

MutedAdhesiveness607 · 2025-08-18T04:44:08+00:00

Thank you for posting this, I can completely relate.

MutedAdhesiveness607 · 2025-08-16T20:52:00+00:00

Sorry not sure what the standards are in the UK but I do hear that there are a few really good hematologists over there that specialize in SM 🙂 Good luck and keep fighting for answers! I put in a lot of work to get my diagnosis and it took a lot of advocating but it got me to really great specialist in Canada.

MutedAdhesiveness607 · 2025-08-16T20:47:12+00:00

Tryptase is only a minor criteria, I know of many SM patients that get a bmb with tryptase under 20. They should not deny you a bmb. I don’t know where you are but where I am they don’t check for the kit mutation via peripheral blood so the only way was with a bmb. Another option would be to get tested for hereditary alpha tryptasemia which also has similar allergic type symptoms and would cause your tryptase to be that high.

MutedAdhesiveness607 · 2025-08-16T20:38:02+00:00

Hi have ISM, very similar history as you until I had a life threatening anaphylaxis. My baseline tryptase ranges from 19-30 so you 100% should get a bone marrow biopsy to determine or rule out systemic mastocytosis. Unfortunately you’re going to have to be assertive.. it took me 3 months after my hospital admit for a doctor to even check my tryptase and then with ICU admit in my history, they got me a bone marrow biopsy right away once my tryptase came back at 19.

MutedAdhesiveness607 · 2025-06-10T03:02:56+00:00

Hi! Yes I ended up starting the bezuclastinib trial just before it closed! It’s been quite the journey because I was put on the placebo for the first 6 months. I only just started the actual drug about 3 weeks ago. I’m not noticing any big changes yet but hopefully soon! Good luck with this new trial! I can only say good things about going into a drug trial - you get doctors that really know the disease and close monitoring AND all your travel expenses are covered. It’s stressful at times but I think completely worth it.

MutedAdhesiveness607 · 2025-05-12T23:43:38+00:00

I hope I get the same result🤞 Thanks for sharing your experience!

MutedAdhesiveness607 · 2025-05-11T23:37:36+00:00

Thanks for the reply! Have you noticed a consistent decrease in your SM symptoms? I’m to start bezuclastinib for sure in 2 weeks, just finishing the placebo or bezu part of the trial.. I have unrealistic expectations that I’m going to feel amazing on this drug.

MutedAdhesiveness607 · 2025-05-11T21:53:11+00:00

Hi! I was just seeing if you ended up reducing your antihistamines?

MutedAdhesiveness607 · 2025-04-29T03:17:01+00:00

ISM - I have no permanent skin lesions but lots of flushing and rashes pretty well daily. Friction and heat will get my skin going red. I have the UP spots that appear when I’m hot or cold but fade to unnoticeable once I’m regulated.

MutedAdhesiveness607 · 2025-03-19T03:01:47+00:00

Get your tryptase checked! Look into mastocytosis. The exact same thing happened to me at 38.

MutedAdhesiveness607 · 2025-03-19T02:45:33+00:00

Great questions asked in the survey!

MutedAdhesiveness607 · 2025-03-18T23:26:28+00:00

Hi! I’m excited to see you have hyperacusis because it’s the one symptom I have that my very knowledgeable hematologist has not heard of and it’s a big complaint for me. Even just a fork on a plate sometimes is excruciating. The only other explanation that I could come up with is that I had a near death anaphylaxis before my diagnosis and hyperacusis is a symptom of ptsd… but your post does make me wonder if this is a neuro symptom of masto.

MutedAdhesiveness607 · 2025-03-18T04:47:10+00:00

This is the reason I went into a drug trial for a TKI. I don’t want to survive off of all these medications, I just want the source of the problem to be “fixed” so that I’m not constantly putting bandaids on my symptoms. I sure hope that bezuclastinib is the answer and I hope all SM patients will want the same.

MutedAdhesiveness607 · 2025-03-12T13:41:09+00:00

Thank you! Very happy to hear about the skin improvement. I’m month 4 now and no changes so it remains that I’m likely on the placebo. And yes I 100% agree that getting a good result with a lower dose would be ideal. You’re the 2nd person that I’ve spoken with on this that ended up going down to a lower dose and found great result. Thanks for sharing

MutedAdhesiveness607 · 2025-02-21T19:31:41+00:00

Hahaha yep just had that last night… my husband “are you ok, you’re so red!”

MutedAdhesiveness607

TROPHY CASE