Methylprednisolone reduction...what are the good ... - LUPUS UK

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Methylprednisolone reduction...what are the good effects of stopping?

AnonLupi profile image
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Hello! I've been taking Methylprednisolone longterm for lupus (along with plaquenil) and over the past 8-10 months I've finally tapered down to 2mg every other day until Jan 1st. I'm thrilled to be stopping it, well hopefully, but I can't find any info about what to expect. Especially positive things. Right now I'd like to hear positive things 😁 anyone have any experience?

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AnonLupi
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Bigbang2022 profile image
Bigbang2022

congratulations on your taper! I’ve been doing the same this last year after an unsuccessful taper last year - flare up, pain and needed to go back to 10/20mg and then start again. (although only on prednisone and not methyl prednisone). Successfully tapered off it this time, it’s been about 2 weeks without any but going from 2mg to 0 did take me about 4 months. I’ve been on it since my first flare involving a long ICU stay 2.5 years ago and have managed to go from 120mg to 0mg, so it’s possible!! Well done on your perserverance and I think if you can get to 2ng okay then you will be able to come off: my rheumatologist said that after a long time at a lower dose your own cortisol will kick in (takes longer depending on how long you’ve been on steroids for) and natural cortisol is about 5mg so the 2mg is barely doing a lot for you. Keep going but slow the pace as you get closer to 0mg. Re coming off hydroxychloroquine, is this something your doctor recommended? I’ve been told to keep taking this as it prevents flares but also know it can cause some side effects when taken long term. Be keen to hear how you are tapering off it and what was advised. I am thinking of asking my rheumatologist if I can come off of it at my next appointment. Good luck! I feel happier in myself to have come off something I was so dependent on and this time didn’t get a major flare, or aches that I did last time.

AnonLupi profile image
AnonLupi in reply toBigbang2022

Thank you for your reply! And congrats! I'm now off medrol on week! I still take plaquenil...I think I wrote that in a confusing way. My rheumatologist said probably life long medication. Happy New Year x

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