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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)
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@onions68

I am new here and was diagnosed in August 2023 - I had pain in my hands and feet but my major concern was I couldn't lift my shoulders above my head without pain and groin pain which didn't go away and was radiating into my buttocks and thighs (particularly whilst sitting) and I felt like a cripple trying to get out of a chair/the car after sitting for a long time.
Interestingly, I had an episode of sore hands and feet about eight years ago and I was diagnosed at the time with a viral arthritis which resolved after about 18 months. My dad has had PMR for approx 20 years, so I clearly have the genetics. I had long Covid and I wonder if that set off this PMR for me. My rheumatologist says there has been a small increase in rheumatoid inflammations/arthritis worldwide since Covid and they aren't sure if it is the vaccine or a result of Covid.
Both times my bloods have been fairly normal and my rheumatologist tells me it is called zero negative PMR which does happen.

I was put on 10mg of pred for two months and what wonders that did. I was then asked to taper 1 mg per month. Sadly, I couldn't get past 9 mgs which I am currently on in combination with Methotrexate which I started three weeks ago - 10 mgs and now 20 mgs. The plan is to then taper down the pred to zero.

My major issue is fatigue, particularly at the end of the week and feeling unwell two to three days after taking the methotrexate. I also get episodes of sweating/hot flushes at random times and at night time (wakes me). Does anyone else get this?

I am 55 and in Australia.

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Replies to "I am new here and was diagnosed in August 2023 - I had pain in my..."
John, Volunteer Mentor | @johnbishop | Jan 8 7:24am

Welcome @onions68, I don't have any experience with Methotrexate but hopefully other members with a similar experience will respond. There are a couple of discussions you might find helpful:

--- Chronic Fatigue while tapering Prednisone for PMR: https://connect.mayoclinic.org/discussion/chronic-fatiguewhile-tapering-prednisone-for-pmr/
--- Feeling tired! Do others with PMR feel significantly more tired?: https://connect.mayoclinic.org/discussion/feeling-tired/

@oldkarl, @barracudacool and @nancy334 have shared posts on Methotrexate and fatigue in other discussions and may have some thoughts or suggestions.

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DadCue | @dadcue | Jan 8 10:16am

There are several theories about who are most at risk of PMR.
https://www.arthritis-health.com/types/polymyalgia-rheumatica/risk-factors-and-possible-causes-polymyalgia-rheumatica#:~:text=Several%20potential%20causes%20for%20PMR,giant%20cell%20arteritis%20occur%20together.
I definitely think Covid and/or the vaccine are possible triggers.

I had some success with Methotrexate (MTX) when my rheumatologist wanted me to try it. I would say MTX allowed me to decrease my prednisone. Unfortunately my liver enzymes increased as my prednisone dose decreased. Overall, MTX just made me sick. Don't let me discourage you. I firmly believe you never know what treatmen might help you unless you try it to see.

Sweating and hot flushes happen to many people. It is likely a side effect from prednisone.

For your Dad to have PMR for 20 years seems like a long time. PMR is supposed to go away after a few years. There is a "proven genetic link" to many types of inflammatory arthritis. Those disorders never completely go away and tend to relapse and become chronic conditions.

I was diagnosed with inflammatory arthritis at the age of 32. When I turned 52 there was nothing that prevented me from having PMR in addition to inflammatory arthritis. Your diagnosis is what a doctor says it is. However, one autoimmune disorder is very difficult to distinguish from another autoimmune disorder. It is also difficult to know what treatment will work.

I do know that the longer I was on prednisone, the more fatigue I felt. This was probably caused by chronic inflammation and/or a prednisone side effect that caused adrenal insufficiency. Basically, the longer I stayed on daily prednisone, (13 years), the worse I felt. I'm off prednisone now and I feel infinitely better.

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