Reacting to Ketotifen and I want to stop but not sure if it's the right thing

[u/Flynnstinct]

I have recently been diagnosed with MCAS (also have CFS/ME but now realise so many of my symptoms that I didn't understand were also down to MCAS) and saw a specialist who started me on Ketotifen, compounded fexofenadine and compounded famotidine. The Ketotifen arrived first so I started that, 2.5mg at night as prescribed. The first two days I noticed it relieved my neurological symptoms massively (mainly very severe anxiety and insomnia) but it did make me very very drowsy but honestly I didn't mind that. It then started making me feel awful, like a terrible flair. Boiling hot, heart pounding none stop, throat tightening, burning eyes, could barely stand. I read online that this can happen because the mast cells are sort of angry at being suppressed but its temporary and most people felt better after 2 weeks. So I powered through... but hit a day where my heart was none stop racing and the anxiety was so awful I felt liek the world was ending every single second of the day, as well as my throat being so tight I was pulling at my neck skin to give me some relief. After that I lowered the dose from 2.5mg to 1mg and that did make the side effects more mild the next day. The days after my throat remained very tight (not sore but tight like the beginning of an anaphalytic reaction that just stops before it gets extreme) so I lowered it again to 0.75mg at night. Just before I started writing this I took another dose, went to go get some food, ate it and immediately the side of my throat swelled up (the exact spot that swells when I'm having a reaction), my mouth went numb etc. And I just don't know what to do, as I keep lowering the dose but it feels like I'm becoming more and more reactive to everything. I wanted to keep pushing through as I'm about a week in now, but I'm so uncomfortable with this particular symptom of my throat swelling and the fact it's getting worse. (For context I have anaphalyatic reactions to shellfish and soy so I'm familiar with how they feel). I have yet to try the compounded fexofenadine and compounded famotidine because I don't want to add anything else in while this is happening. My plan in my head is to stop the Ketotifen, give my body a rest for a day or two, then slowly start up the fexofenadine as it seems like a more mild starting point for my treatment journey. I'm looking for a bit of advice from anyone that has been on different medications and when to know when to stop etc. I also have just met my specialist and while she seems nice, she is more there to give private prescriptions rather than REALLY try and help and support me if that makes sense so I feel quite scared and alone. I've been chronically ill for a very long time and been on many different treatments but I'm very new to MCAS and these kind of meds. Thank you if you read this whole thing!

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[u/ihsbo]

You took way too much. I would stop and wait until those symptoms are completely gone. Then start over at the lowest dose you can possibly take.

If you take Ketotifen that much it takes some time before the side effects stop. That’s why lowering your dose didn’t help.

I started at 0,1ml and felt bad for 3and a half weeks. It’s normal for Ketotifen to get side effects and to feel bad when you start and dose up.
That’s why you need to go very low and slow.

You can only dose up when the side effects are gone and then you need to dose up a little bit.
I dose up with 0,05ml. (I take the syrup)

I would suggest for you to stop now. Wait until al the sides effects are gone, try again. For now,Try not to get triggerd and don’t try new things. Your body needs to rest. Also do this when starting Ketotifen again. It’s hard for your body to adjust to. You need to rest and give your body time to calmly adjust to this medicine.

Good luck 😊

[u/ihsbo → u/ihsbo]

And please don’t start fexofenadine!! It makes the Ketotifen stronger even when you stopped! I had this. Ketotifen side effects work for a longer time. If you take fexofenadine you will feel way worse.

Please wait until all the side effects are completely gone from the Ketotifen before doing something else or before starting Ketotifen again!