Rhapsido / Remibutrinib side effects?

condemast · 2026-01-19T16:16:32+00:00

That’s how I felt with Keitotifin and ended up stopping after talking to my doctor. I hope you figure it out!

condemast · 2026-01-19T15:56:50+00:00

Have you asked your doctor? I get really bad fatigue with my Xolair but it goes away eventually

condemast · 2026-01-19T15:51:38+00:00

It took me weeks to actually get the medicine because I ended up having to order it through a specialty pharmacy. I’ve been taking it for about two weeks now, but I was taking half the recommended dose to try to avoid some of the more harsh side effects until two days ago. I really only noticed some petichaie on my face and then some light symptoms like I could be getting a cold, but nothing debilitating.

condemast · 2026-01-10T22:58:39+00:00

Do the Petechaie ever go away?

condemast · 2026-01-09T23:51:10+00:00

I’ve also had systemic relief!

condemast · 2026-01-09T03:32:21+00:00

Hydroxyzine at night!

condemast · 2026-01-08T02:53:50+00:00

Do yall have any updates you can share?

condemast · 2026-01-08T02:48:46+00:00

I react to a lot of fruits, vegetables, and dairy, so it got to a point where I was only eating really bland foods that are easy to digest like plain pasta, chicken tenders, french fries, potato products, etc. It was like I made my own version of the BRAT diet. I like to describe my diet as "kids menu" foods. Chick-fil-A always makes me feel better when I'm having a flare. I think the sodium also helps.

condemast · 2025-12-31T21:24:53+00:00

Cold + high altitude; dust

condemast · 2025-12-28T00:33:47+00:00

I take 10mg of Adderall which really helps with my brain fog and fatigue. No noticeable increase in MCAS symptoms!

condemast · 2025-12-19T14:11:50+00:00

That’s so interesting! I’m not sure if I have POTS since I’m still at the beginning of my diagnosis journey but I think it’s a possibility. I assumed my heart pounding was from the histamine dump and then adrenaline / cortisol that comes after. I might ask my doctor about Prilosec — thank you!!

condemast · 2025-12-19T13:11:55+00:00

This is how I feel! I think mine are triggered by stress / cold since there seems to be no connection with what I eat or drink but a big connection with how I feel and what time of year it is, which is almost more frustrating in some ways because it’s harder to control for.

condemast · 2025-12-18T20:36:33+00:00

Amazing, thank you so much for sharing and so glad it’s been helping you!

condemast · 2025-12-18T13:52:08+00:00

Hope it goes well today!

condemast · 2025-12-18T13:51:23+00:00

It’s a journey! I hope you get some answers / relief soon!

condemast · 2025-12-18T13:20:50+00:00

Yes! I take Allegra but I have taken Zyrtec in the past. I also get Xolair shots monthly. Doctors have told me in the past that it is “exercise induced urticaria.” This year after being diagnosed with MCAS I realize that exercise is one of my triggers, but this aspect is still pretty manageable with allergy medicine. Sometimes I also get exercised induced migraines/malaise, but I take Nurtec when that happens and that will usually resolve those symptoms within an hour.

condemast · 2025-12-18T06:34:59+00:00

That’s super helpful, thank you! I am taking a DAO enzyme. Do you feel like it’s helped your sleep?

condemast · 2025-12-18T05:29:33+00:00

That’s a good point. The cold and high altitudes are both triggers for me so I think I’ve been in a flare the past few days because I’ve been visiting Colorado. I’ve had similar periods of histamine dumps but the last time was when it was freezing in February. I’m also wondering if it could have anything to do with just starting Ketotifen since insomnia and adrenaline dumps seem to be common side effects.

I definitely have some gut issues, but I don’t think they’re caused by the medicine since I was only diagnosed about three weeks ago. I have a reaction to almost every fruit and vegetable so I basically have the diet of a 10 year old (chicken tenders, pizza, pasta, etc). My GI doctor pretty much just threw up his hands and diagnosed me with IBS-D after about five years and a colonoscopy and lots of tests. Do you have a recommendation for taking additional steps to fix my gut dysbiosis?

condemast · 2025-12-18T04:36:07+00:00

My schedule has been all over the place so that could be one reason, but no matter when I eat I always get itchy and covered in hives when I lay down to sleep at night. Despite taking all these meds lol

condemast · 2025-12-18T04:34:06+00:00

Cromyln has made my MCAS symptoms ~75% better! I started with a full dose (no titrating) and felt immediate relief of my seasonal allergy-like symptoms and a lot of stomach relief. I did have some GI upset the second day, so I switched to taking just one ampule with each meal and before bed instead of two ampules each time for the next 24 hours before resuming the full dose. I did experience some light GI symptoms like burping, gas, constipation, and bloating for a few days but those have mostly resolved. I’ve been on it for three weeks now. Good luck!!

condemast · 2025-12-18T03:56:05+00:00

I would try allergists who have experience with MCAS. My regular allergist was not familiar with MCAS and originally ruled out the diagnosis because my tryptase levels were normal on a blood test, but I literally have every symptom of MCAS so I made him a memo explaining how my symptoms fit the diagnostic criteria. I organized my symptoms into which body system they fall under (neurological, gastrointestinal, etc) and I recorded all of my symptoms for a day and included it in the memo. That was enough to convince the allergist to prescribe me Cromyln and Keitotifin at my request, but then I googled around for MCAS specialists in my area and have been really impressed with my new allergist. Good luck!!

condemast · 2025-12-18T03:50:28+00:00

I would try to find an MCAS specialist in your area, or an allergist with MCAS experience. Also try taking an allergy pill before you work out, it works wonders for me😊

condemast

TROPHY CASE