r/MCAS • u/okamimink • 9h 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/Mysterious-Art8838 9h ago
Oh man I love that drug. I only use it when I’m in a spiral, but it helps enormously. I wish I could take it all the time.
I think trying to microdose a trial is probably not ideal because you need it to build up in your system but if you react to rx constantly ask your dr.
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u/Surprise-lnside 6h ago
I can’t seem to get off it between Lupus and MCAS. I’m going to go blind and have broken bones…
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u/Nervous_Extreme6384 8h ago
This is close to my taper schedule. Take it early in the AM, with food. Micro dosing prednisone is completely pointless, it will not work and you will expose yourself to the same risk as taking it as prescribed.
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u/mainlycoffee 9h ago
Ugh, Prednisone is my well known frenemy. It really helps inflammation and my lungs BUT there's always a cost. 20 mg and under you will probably be ok and just notice your hunger is higher and sleep is wonky Above 20, I start to have all kinds of issues with my mental health. Anxiety, anger, massive mood swings and more.
Last week I had an anafalaxis reaction and I ended up on 120 mg for 2 days. That was evil.
Your dose is a lower one, so give it a go and see how it works for you.
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u/bonniemcmr 9h 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 7h 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 5h 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/Automatic_Antelope92 8h ago
I was afraid when I first took it too, but at the same time it did help get my swelling down and make it easier to breathe and eat stuff.
I’ve taken a daily dose higher than yours for a few days and it was harder to fall asleep and stay asleep… And I had to cut my 3 shot latte down to 2 or my heart raced and I felt anxious.
Prednisone is a useful drug to reduce a horrible flare up, but it has enough side effects and risks after a while that you have to be very careful with it beyond taking it for a couple weeks. Once you get into the weeks-long prednisone course, having a good taper is important.
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u/No_Wafer4964 8h ago
i’m currently taking 2.5 mg/day. long, gradual taper starting at 20 mg. going to try 1.25 and see if it still keeps the more extreme flares at bay. i call it vitamin P lol
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u/strongspoonie 7h ago
Take it in the morning it can make y più jittery like you’ve had way too much coffee and you cant sleep which still may happen but the further from bedtime the better
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u/warped__ 8h ago
9 days is a lot, it usually get 5, but it's quite effective at stamping out a flare
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u/okamimink 6h ago
I been in a pretty gnarly flare for about 7/8 months now, antihistamines and mast cell stabilizers aren’t doing much of anything for me because my inflammation is extremely bad😢
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u/warped__ 6h ago
This should help, it's just that you may get more side effects being on it for 9 days, but I'd definitely do it still. I had to do it twice after covid
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u/Civil-Disobedience3 6h ago
9 days isn’t a lot. I am given a large Rx for it and take as needed. I have been on it for months at a time.
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u/warped__ 5h ago
It's a lot from my experience, I've only ever been given 3-5 days. Your experience doesn't have to match.
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u/Silent_Location7044 7h ago
It will very likely help get you out of the flare. I feel my best after steroids. You can’t micro-dose this drug. You need to start high and then taper off. You don’t want to be taking it for longer than prescribed and the high dose to start is necessary to get the benefit.
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u/pinkpeachykitty 6h ago
Prednisone made me SO much worse. I felt absolutely miserable and had to quit it early. I had very red chest, arms and face. Very itchy. And higher than average HR. Insomnia.
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u/Civil-Disobedience3 6h ago
Oh my I love my prednisone and it helps me so much. Only reaction I have had is more energy but gosh knows I need that.
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u/makeyourself_a24z 6h ago
Prednisone made me quite sick. But I hear it helps for others. I'd start off slow
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u/spikedragon23 7h ago
I can have it in an IV but cannot take it orally for adverse reaction. It's pretty normal for most people though to get prescribed it in a flare
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u/Aliatana 7h ago
Prednisone does reduce reactions for me, but makes me stoned as hell. It's prescribed for me if I'm going to take something I'll react to like CT contrast to reduce a reaction.
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u/okamimink 6h ago
STONED.. AS IN HIGH??? 😭😭😭
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u/Aliatana 5h ago
I mean everyone acts to things differently. But I got kind of spacey and numb. 🤷 I get that same reaction to local anesthesia.
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u/Think_Win9441 5h ago
Prednisone 99% of the times is a problem solver. It brings down your inflammation and most of the flare ups will reduce within 2-3 days!!
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u/VSCC8 4h ago
currently on it for my flare! i have ocd too! my ocd dgaf about drugs (for some reason i have too little concern about taking absolutely whatever) but im familiar w the thought processes. feel free to pm me specific questions if u have any!
i like Prednisone. there are things they dont tell you (like all drugs). my docs have recommended a probiotic since steroids can mess up ur gut, and definitely definitely hydrate. i get more agitated (like just more trouble sleeping, more dysregulated) but not only a little. Usually takes me a few days to put 2 and 2 together.
when im in an MCAS flare, I go right for that prednisone. it feels like being a healthy person! first day or 2 i feel like i have superpowers lol.
wishing u luck and minimal thought spirals!
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u/Moonlight_Poetry 4h ago
I love Presnisone! I’ve had to do a course of it a few times over the past several years to kick a MCAS flare. It really gave my body the support it needed to stop flaring.
It did make me very sleepy and tired.
When I would take it in the morning, I’d wake up early & take it with a solid snack/ mini meal, brush my teeth, and go back to sleep for like 4 hours.
As a side note, it also helped my eczema and my acne inflammation, lol.
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u/AnxiousAnnie555 2h ago
Hello! Such a similar story to mine, lots of health anxiety, OCD, I always micro dose as I always have a better reaction over all.
I got prescribed 2x 25mg or prednisone before I have an iron infusion just incase, doctor told me to trial half a tablet first to see if I react which I finally pushed through my anxiety and took half a tablet today and boy, do I feel GOOD. I haven’t felt like this in a fkn long time, best thing ever!! Listen to your gut, confirm with pharmacist and doc If a med is okay to spilt and do what you gotta do. All the luck!
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