Posted , 7 users are following.
I have had PMR for about 8 years and probably several years before that but undiagnosed. I am now in the midst of a flair and several of my fingers recently may indicate the start of RA. My rhemy told me that it is basically the same disease but PMR involves the muscles and RA the joints. Has anyone else heard this or experienced it? Thanks in advance for any help.
0 likes, 23 replies
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Daniel1143 rosalie76675
Posted
Similar progression here. From classic PMR in my thighs and shoulders and eventually progressing to my hands and fingers. Like you, my Rheumy suggested it might be LORA which may begin as PMR and evolve. Many months later, neither he nor I are certain one way or another. Situation continues to confound. Interestingly, my hands and fingers would flare, but my joints felt fine. I ocnitnue to believe it's PMR
As a point of interest, the prevailing view among Rheumy's is that PMR doesn't affect the hands and fingers. Hence, the belief that what I had was LORA. However...I've since learned from this forum that there are many, many cases like yours and mine. PMR can, indeed, float into your hands and fingers.
gillian_25383 rosalie76675
Posted
Yes,diagnosed age 45 with PMR that by 58 has now morphed into PMR/inflammatory arthritis.Half the time my rheumatologist just says "arthritis ".Had to see a new younger rheumatologist who says d it must have always been arthritis as 45 was too young for PMR and it does NOT affect hands (he obviously has never accessed this forum).
Hey ho I have a really bad flare up in my hands and feet just now so will have to see what tomorrow's blood tests show up.
judy93591 rosalie76675
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EileenH rosalie76675
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PMR probably doesn't progress to RA - what they believe often happens is that LORA (Late Onset RA) presents looking just like PMR but there are no other signs of RA (no raised rheumatoid factor for example) at the time. Often patients have difficulty reducing their dose of pred or it lasts a long time and the rheumy has a rethink and find joint problems - erosion pretty much is the only definitive sign of RA.
As Daniel and Gillian say, many rheumies believe that PMR doesn't affect hands and feet and if it affects hands and feet it must be RA. They are wrong - the Leeds rheumatology group has shown it does affect them. And PMR isn't an arthritis so it isn't a case of 1 form of arthritis morphing into another. PMR is a vasculitis.
PMR can affect joints - in that there is synovitis, tendonitis and bursitis. What doesn't happen is erosion and I have previously described PMR as RA without damaged joints - because its effect is much the same. Except for about 75% of patients it does go into remission in up to 6 years or so.
I don't believe it IS an evolution, nor do many rheumies - it is a mistaken diagnosis that is revised later. Not their fault. I also think that the patients with PMR who benefit from methotrexate or another DMARD didn't have PMR in the first place - they had an inflammatory arthritis. So I suppse there is a good enough reason to try them - they may work.
Daniel1143 rosalie76675
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EileenH Daniel1143
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The first time I've heard the theory plaquenil is "safer" than methotrexate (it has nasty eye side effects so I hope you are having regular eye checks) - and surely if that were so they would start with it in RA rather than methotrexate? But more to the point has been that no studies have shown it to help in PMR - quoted in the most recent Guidelines in fact. There have been studies using methotrexate - they were mixed.
The other point of course has to be that not everyone with LORA or any other inflammatory arthritis responds to all of the DMARDs. It is something of a lottery whether they chooose the right one for you to start.
amkoffee rosalie76675
Posted
One of my prevailing pains when I was first diagnosed was the pain in my hands. I was blaming it on holding my cell phone too much. Could hardly hold my phone it hurt so much. And within a day of pred it was gone. I've told my Rheumy and she says it may be arthritis but since I'm so new at this PMR thing and am having trouble reducing she has just started me on Methotrexate. Took my first dose today in fact.
Daniel1143 amkoffee
Posted
How long since your diagnosis? And how long have you been unable to taper? I presume the addition of Methotrexate was to counter the possibility of LORA. My strong advice is to read about the side effects of Methotrexate and decide for yourself whether htis additional medication is worth the risk. Have seen very little evidence among forum participants that it does anything to reduce the effects of PMR.
Anhaga amkoffee
Posted
Amkoffee, do you have a new diagnosis of PMR? I think you weren't dagnosed with PMR that long ago were you, so is RA the reason you've been prescribed mtx? It's a bit soon to be worried about steroid reduction if you actually have PMR.
Anhaga
Posted
amkoffee Anhaga
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Yes I am new to this. I just started pred in September. I started at 15 mg and still hurt so went up to 20mg, stayed there for two weeks, reduced to 15 mg for two weeks, then 12.5 mg for two weeks, then when I reduce to 10 mg I started hurting again. So doctor said up to 12. Still hurting so dr said up to 15 mg and see me in 2 weeks. There I told her I just can't handle 15 mg. I'm all jittery and my hands are shakey. I told her I'm willing to take some pain just to get down a little on the pred. I did tell her about my hands at that time. But my only pain in my hands right now is my left thumb and index finger. So she did suggest it might be arthritis. So she said she wanted me to start this medicine.and reduce my pred to 12.5.mg. I've been on the 12.5 for several days I still have pain in my right wrist and elbow but I'm thinking it is a case of tendenitist because it comes on when I use my tablet a lot. So I'm going to get an injection in it at my pain management office and see if that doesn't work. I've still got the damn jitters and shakey hands though. The jitters are not as bad as they were on 15 mg though. And I know that she has me tapering too fast. I've talked to her about this and the slowest she seems willing to go is 1 mg every two weeks.
So that's the whole story. I hope I didn't give you too much info.
Anhaga amkoffee
Posted
It's tough when you have unpleasant side effects isn't it? My doctor had me reduce by 1 mg every week after I'd been at 15 for five weeks. I think it's probably the big steps you've taken which have caused the probelm. At least that's a likely explanation. I was okay with the 1 mg a week until I hit 9, and then I too felt symptoms return and had to go back up to 10. Then I found the dead slow method and have used that ever since. I showed it to my doctor and she said it looked fine. And she's been very pleased with my progress. I do remember, however, that she wanted me to move a bit faster when I was around 8 because my DXA scan showed low bone mass. I stuck to my guns, thankfully, and things continue to progress nicely. But I do everything I can to improve my health generally, so I think that's been helping. Not relying on pred alone which doesn't cure anything.
Daniel1143 amkoffee
Posted
By way of example, I started out at 20 mg for six weeks, then dropped 2 1/2 mg over the next six weeks. When I got to 15 mg, I slow down precipitously. Over the past year, I have managed to drop from 10 mg to 2 1/2 mg. That's only slightly faster than half a milligram per month. Anything faster than that, and I suffer for it
FlipDover_Aust Daniel1143
Posted
In my case, MTX is being used as a steroid sparer - meaning it's helped me reduce the amount of prednisone I am taking as it makes the pred work more effectively.
It's not been given to reduce the effects of PMR as such.
EileenH Daniel1143
Posted
Yes, as Flip says - for most people with PMR the methotrexate (or any other drug) is being used in the hope it will work as a "steroid sparer". There is a theory that these drugs potentiate the effect of pred - make a given dose more effective so you get a better effect with a lower dose.
There have been about 3 studies a few years ago - and one said it helped, one said it didn't, one didn't know. In a few countries rheumatologists do use it from the start: the patient may be put on both mtx and pred, and a higher starting dose of pred is also often used, 25mg is common.
The latest recommendations are it can be tried in agreement with the patient, particularly if they are at high risk of side effects (diabetes, cholesterol, osteoporosis and so on). Plaquenil is mentioned as there being no evidence, no other DMARDs get a mention.
judy93591 FlipDover_Aust
Posted