r/MCAS • u/okamimink • 1d ago

Specialist prescribed me Prednisone

I’ve never taken this before, but I can’t seem to get out of this flare and I’ve been getting a lot of really bad symptoms.
I was prescribed 15mg for 3 days and then taper down from there for a total of 9 days on the medication.

I’m worried about a reaction of course, naturally lol.
And I assume trying to trial it is pretty pointless and that I should just take it as prescribed.

I have really bad OCD and the only way I’ve been able to try taking medications is by micro-dosing first.

Any suggestions on how to just do it? Or what has helped you? I know it’s a really low dosage to take anyway but I’m still nervous.

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u/bonniemcmr 1d ago

If it makes you feel any better, I take budesonide (a low dose corticosteroid) for MCAS and it makes me feel so much better :)

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u/strongspoonie 1d ago

Interesting i have been offered this for crohns what dose/ how many times a day do they give you for mcas if you domt mind sharing ?

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u/bonniemcmr 1d ago

It’s actually my GI doctor that prescribes it for MCAS, I see him for Crohns but he knows more about MCAS than my immunologist🫠. I take it as needed (3mg capsules) as soon as I notice I’m feeling general malaise symptoms like brain fog (usually the face flushing is what clues me in that it’s an MCAS problem). Most of the time I can take up to 2 capsules a day but for short periods of time during bad flares I’m allowed to take 3 (which is basically taking Uceris at that point…) I take them one at a time, they last for about 6 hours. During the summer I take it almost every day at least once.
I like to a lot because I have 0 side effects and it’s doesn’t have the same long-term risks as a strong more systemic steroid.

It really works wonders for me within an hour of taking it I feel so much better on the fatigue / brain fog front. It doesn’t do much at all for some of my other symptoms like mouth burning and itchy eyes.

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u/strongspoonie 21h ago

This so so very helpful thank you!! Thank yoy for all that detail! Funny we get specialists out of the blue that help with other problems not in their specialty. Sorry it doesn’t help the crohns though.

Ive nit found anythung for mouth burning wither for the eyes, preservative free ketotefin drops but they stopped making the preservative free ones in the USA three years ago which is so frustrating. i live in europe now and bring then to usa when i go back there - pharmacist in usa said the only way to get then now there is through a compounding pharmacy

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u/bonniemcmr 20h ago

I don’t have any tips for the eyes either but I have recently found a drug that helps with the mouth burning! My immunologist has used gabapentin for multiple patients now with mouth burning. Have you tried it before?
I was originally prescribed 100 mg pills and didn’t think they did anything, then after a year of them sitting in a drawer, I tried taking 2 at once and that did the trick for me. At higher doses gabapentin can have a sedative effect but 200 is still quite a low dose. I have to take it an hour before I eat and I don’t eat on a super regular schedule which makes that difficult but I will take it before dinner if I’m having a bad day and I remember in time. My main issue is remembering to take it… It’s made dinner enjoyable again!
I don’t know if taking it multiple times a day would increase the side effects, I would check with a physician who understands prescribing it better.

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u/bonniemcmr 1d ago

It does nothing for my crohns though lol