PMR, RA or ??? any advice?: Diagnosed November 201... - PMRGCAuk

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PMR, RA or ??? any advice?

Musiclady18 profile image
9 Replies

Diagnosed November 2018 Over that time was put on prednisone and then methotrexate and then I made it down to no prednisone since July 2021 or methotrexate since October 2021. I have been in lots of pain for the past 3 weeks???? November and December felt fantastic! Today spoke with Rheumy and she mentioned not sure PMR has burned itself out and could possibly now be Rheumatoid Arthritis?? She suggested I go back on Prednisone and Methotrexate for next month to see what happens? Anyone else been on this kind of journey with their PMR? Weather here in Ontario, Canada has been unusually damp and cold for the past month and today has been my worst day so far, couldn't grip with my hands, pain in my fingers, wrists, knees, ankles, and neck in major pain. Hard to walk. I felt like I was back to 3 years ago when my PMR journey began and now RA?

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Musiclady18
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9 Replies
Constance13 profile image
Constance13

Is there any way you can try prednisone for a few days? If it works it probably means the PMR has re-occurred (PMR never really 'goes' it's only in 'remission' - so we are told)!

Of course RA is also possible. Do strong pain killers work?

I have PMR and aggressive polyarthritis. The weather here in Germany has been rubbish for weeks - grey, very cold, windy and masses of rain and I am in constant pain.

Do as your doctor advises - go back on Pred and MTX.

Good luck. 💐 🍀🍀🍀

Musiclady18 profile image
Musiclady18 in reply toConstance13

Thank you!

PMRpro profile image
PMRproAmbassador

Six months seems a fairly common time for PMR to resurface after stopping pred - probably because the underlying cause of the PMR is at a very low level and it takes time for the inflammation to build up.

Is the pain in muscles and around joints as opposed to in the joints? I feel a major difference when the weather is damp and windy - it's cold (rarely above freezing), it is winter, but it is definitely damp that does it to me!

Musiclady18 profile image
Musiclady18

Seems to be my joints? Fingers, wrists, knees, ankles, neck. Thank you for your words of advice!

PMRCanada profile image
PMRCanada

Hello fellow Canuck! I too am in Ontario, Canada.

Can your rheumy do bloodwork to test for RF (rheumatoid factor)? 0-20 iu/ml normal (negative). My results were less than 10 and considered negative.

They can also check ACCP (anti cyclic citrullinated peptide) to help identify/rule out RA. Less than 20ml considered negative…mine was less than 5.

My new rheumy also completed a (brief) physical exam (including small joints in fingers, etc), and her associate had me complete a lengthy survey asking for detailed info at my first appointment.

All this to determine the possibility of RA and to better understand my symptoms and history as a PMR patient and formulate a treatment plan with results in mind.

Others have responded asking if pain medication provides relief, a short course of pred may provide answers.

I am have been on Methotrexate 3 weeks now in an attempt to lower my daily pred dose for PMR, where I’ve been stuck for over 2 years (9mg). The new rheumatologist has the same plan for me that you’ve already completed. She seems to think the way forward is somewhat standard (dare I say simple), when indeed, I think it is more complex. Your current situation is a reminder of that.

Hope you sort it out…hard to know how to move forward until it is. Pred will provide relief from PMR symptoms, Methotrexate is used by RA patients. So if you start both, I’m not sure you will get a clearer picture (although both meds seemed to have helped with your PMR). Sorry to hear of your ongoing pains, and my wish is that you will get relief, and answers, soon!

Musiclady18 profile image
Musiclady18

Fellow Canadian oh the path we travel…..so great to hear from you. I am thinking Rheumy just wants my pain gone. I asked as she had tested for RA she said the test could be negative but my recent symptoms are leading her to that thought I am going for follow up blood work and I think, that she will probably go further as I meet with again in 2 months? But if I have a problem I am to call. I have to say this is my second rheumatologist and she is definitely a blessing as she listens to my ailments ! Thanks for your reply and wishes too!

HeronNS profile image
HeronNS in reply toMusiclady18

There is, as you probably know by now, a condition called seronegative RA, which according to Dr Google is diagnosed through symptoms rather than definitive test result - a bit like PMR! Hope you get answer soon.

Pred is also used in treating RA, although because mtx works for RA they like to switch RA patients over to mtx as soon as possible. I take it mtx helped your PMR? It doesn't work for all PMR patients who try it, and this may reflect whatever is the ultimate cause of one's particular version of PMR as there seem to be several different forms of the condition.

Had you thought of just taking one of the medications first? I know mtx is used for RA, but is only a steroid sparer in PMR. As PMRCanada indicated taking both to begin may muddy the diagnostic waters.

Good luck (from another Canadian) 🍀🍁

Musiclady18 profile image
Musiclady18

I am following what my Rheumy suggested yesterday take prednisone and the methotrexate. I only started the metho in August 2021 did it help? Not sure, I know I did develop a cough from it so that's why I started taking it end of October. I told Rheumy that yesterday but she said take it??? I am going to see if the cough comes back I will be off Metho? Thank you so much for your reply! Are you from Canada too Heron NS, in Nova Scotia? If so, what a beautiful part of our country! Are you closer to Springhill by chance?

HeronNS profile image
HeronNS in reply toMusiclady18

I'm in Nova Scotia, but Dartmouth, not Springhill. Grew up in Windsor, NS, from age of 7. My daughter lives in Ontario (Belleville).

I do hope you get rapid relief from the meds. It's disappointing when you think you are better and then you aren't. I had a much briefer flirtation with zero back in 2020 so can relate!

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