Still have PMR...now RA added on (maybe) ...wanti... - PMRGCAuk

PMRGCAuk

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Still have PMR...now RA added on (maybe) ...wanting to know why long term, low dose prednisone as monotherapy is an issue.

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So I'm at 10 mg now. Going to see my 5th rheumatologist in 1.5 years. Going to ask him if I can just do pred for PMR and my "maybe" RA. Slowly taper and get down to 5 mg or less if possible. I have never tried anything else yet...MTX or biologics, etc. I've had all of these other docs pushing me to add on MTX and the others. Chickened out every time I got close to trying. I have read here and on other sites and on medical sites, and on and on and on, so many people go though so much with these other drugs. The demon prednisone stopped being the favorite when the patent ran out and the drug companies stopped making money on it. I know MTX has been pretty good for people with RA in particular. All of these drugs cause nausea though, and I cannot do nausea. Cannot tolerate it and cannot function with it. An I also can't do PPIs to help with nausea. It's been shown time and again that most of the really bad side effects associated with prednisone are from doses much higher than 10 mg...and generally much higher than that. It doesn't mean prednisone is "safe"...only that the particular set of side effects associated with it at low dose....even long term....seem to me to be no worse (and just as treatable) as some of the side effects of all of these other drugs....drugs which frequently don't work, or take months to work, or stop working after a couple of years. OK enough of this rant. Feedback welcome and please feel free to blast me if you want. I know I am swimming against the tide here. Good article supporting what I am saying: onlinelibrary.wiley.com/doi...

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PMRpro profile image
PMRproAmbassador

What a brilliant link - thank you!!!

There is no real evidence that any of the so-called steroid-sparers do any such thing in a guaranteed way. They may help but it is at the expense of a potential additional layer of side effects - and polypharmacy in the older patient (over 50) is known to pose problems.

My argument is like yours - I've been on pred for 8 years, I have no identifiable side effects. OK, maybe i'm lucky but in the absence of any such problems - why should I add in something that might upset the apple cart?

Luckily so far my current medics think the same way - but I'm not in the UK or the USA and people here are far more laid back about how long PMR lasts and how evil pred is.

in reply to PMRpro

Hi PMRpro,

Thank you so much for your reply. I consider you to be one of the best informed and wisest people in the PMR community. I know everyone is different and there is not necessarily one answer for all, but I whole-heartedly agree with you and appreciate your valuable feedback.

Thank you again and have a wonderful Sunday!!

Diane

TooSore profile image
TooSore

I'm not sure if my opinion counts as I don't know anything about RA treatments. ( I have tested negative for it). However - I have had PMR for 2 years, 3 months; took 6 months for diagnosis and treatment. I started with 15 mg and am now on 2mg. My rheumatologist (from Yale) said if I can be at 3 or under the side effects are almost nil. I want to keep tapering down in an effort to get off of course. It seems to me that if you can slowly reduce you'll be ok with your PMR. I'm just not sure if it's an effective treatment for RA. Can you get a definite diagnosis? Then you can attack it the same way. Start the drug that will help, guard against side effects, make appropriate life style changes. It works (with ups and downs) for PMR. I'd hope the approach would work for RA. Good luck!

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