Myasthenia and RA: I have Myasthenia Gravis, and am... - NRAS

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Myasthenia and RA

ianwebber profile image
11 Replies

I have Myasthenia Gravis, and am tapering off Prednisone. Since I went down from 5mg to 2.5 g I am suffering symptoms of rheumatoid arthritis . It's severe.The doctor has me on naproxen. It's not helping at all. Anyone else experience this?

thanks.

Ian

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ianwebber profile image
ianwebber
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11 Replies
AgedCrone profile image
AgedCrone

Your doctor is probably waiting until you have been confirmed with a positive diagnosis of RA before commencing DMards…Disease Modifying Anti Rheumatic Drugs…which are normally given as soon as a diagnosis is confirmed

Maybe the fact that you have MG means there are some RA drugs that would not be suitable for you….so hang on in there until your test results are through.

ianwebber profile image
ianwebber in reply to AgedCrone

thank you!

Nyreedw profile image
Nyreedw

Hi my partner has Myasthenia Gravis,diagnosed 2 years ago and I've had RA 25 years. He's been on steroids 2 years and finally getting to cut them down. The steroids after so long gave him more problems as well. He's now started mtx ,very low dose ,which I've been on 25 years. He had bad reaction to Cellcept and Imuran, which are definitely used as well for Lupus but Imuran is sometimes used for RA. Mtx and Rituximab, also used for MG and RA. My partner has done an awful lot of research, to be fair, his neurologist compared to my Rheumatologist, is pretty useless. He's had to do most of the research to work out what suits him and we discuss comparison in meds etc between the 2 illnesses. Have you had bloods and xrays done for RA?

ianwebber profile image
ianwebber in reply to Nyreedw

had an x ray and just got results. No RA at all which I suppose is good news but weird because of the joint swelling.

helixhelix profile image
helixhelix in reply to ianwebber

An x-ray is not a conclusive test for early stage RA!! If your doctor thinks it is then that’s weird!

In fact diagnosis can require an intelligent analysis of loads of things, as there is no 100% reliable single test. But ultrasound far better than xray if yiu have swelling.

Nyreedw profile image
Nyreedw in reply to ianwebber

My partner, after researching has found the steroids also cause these problems. He's now cutting down 1mg every 2 weeks and difference is unbelievable. He's been on them 2 years and been feeling awful with them. He's on 6mg now and starting to improve massively. Worth look up x

helixhelix profile image
helixhelix

when you say “your doctor” is this your neurologist or just your GP? I think you need an urgent referral to a rheumatologist to work this out.

Lots of very effective drugs, but everything needs to be checked first as there are also a lot of differential diagnoses fort common symptoms.

ianwebber profile image
ianwebber in reply to helixhelix

thank u! Have a appt with rheumatologist in 2 weeks.

Angels54 profile image
Angels54

oh that’s awful , I’m on 10 mg and trying to get down to 5 mg I’m already in pain so dread it .

GP's are wary of using NSAIDS, Naproxen is one, for an extended period of time. I have managed to reduce my dose by 25%, 2 tabs at night and one in the morning, without them I would be in considerable pain, it has helped me with inflamatory flare ups but it doesn't suit everyone, like any drug it takes time to settle down and become effective, I usually allow a month.

ianwebber profile image
ianwebber

thanks Stephen.

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