Are lingering symptoms of PMR normal? I was diagnosed with rheumatoid arthritis (RA) & given sulphasalazine, (I'm allergic to methotrexate), which took the edge off the pain. I realised my symptoms were not RA and after an internet search found PMR, tested positive, but consultant maintained I'd got RA, hence I did not receive steroids. In August 2019 I recovered after 4 years, and discharged myself from rheumatology. My GP, very unhappy about the diagnosis & treatment I received, gave me a steroid injection March 2020 when I went to see him. I occasionally get short periods of shoulder & hip girdle ache, not PMR pain, although finger tendonitis is painful and I have no energy. In between I'm fine, nearly back to how I was before PMR. I can't find any info about recovering without long term steroid treatment or whether PMR symptoms lingers at all. Is this normal?
PS No spell check and I'm dyslexic ...
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Funnyrook
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PMR is known as a self-limiting illness - so it does (usually) go into remission on its own. However, you never know when that will happen....anywhen from 2 - 6years - sometimes longer.
So if you had it for 4 years (albeit misdiagnosed) it's possible it has gone into remission - but I would ask, how can you be sure the shoulder & hip pains are not a return of PMR? Are you assuming it isn't, because pain comes and goes?
The lack of energy may be related to your body recovering from long term medication (don't know enough about sulphasalazine), plus of course you are a few years older.
thank you, what I get isn't PMR pain which is nasty, my shoulder/neck & hip girdle muscles ache and my energy level drops, but not to PMR level. This last for about 2 weeks. I counted the start of PMR from when the shoulder/neck and hip girdle pain started in 2015. I suspect it's my body recovering from long term inflammation, but it would be nice to have this confirmed.
Sulphasalazine has been around since the 1930s and doesn't have a bad record unlike methotrexate, although it does turn pee sulphur yellow.
Why are you so sure it isn't RA? Or another inflammatory arthritis? A few of them can present in a very similar way to PMR. There are no definitive "positive for PMR" tests - only the CRP and ESR being raised together with a load of clinical findings that increase the likelihood of it being PMR because of the picture created and ruling out everything else it could be. There is a form of inflammatory arthritis called palindromic rheumatism which comes and goes, episodes lasting hours to days or even weeks and then it goes away entirely between times. Theziggy on here was first diagnosed with PMR but the symptoms sounded much more like palindromic rheumatism and eventually the rheumy agreed.
The other option is that your adrenal function is still very unreliable and you are having episodes where it is not responding adequately for your needs. Does it tend to coincide with stress or extra activity?
Hi, no spelling mistakes was luck rather than expertise.
Thank you for your helpful reply, I went thr' a very long list of rheumatoid diseases on an American website, you could have knocked me down with a feather when I came to PMR, it was an exact fit. Not wishing to jump to conclusions I worked my way thr' the entire list.
It's important to stress this isn't a return of PMR, the muscles are achey not painful, it's as though they retain the memory of the inflammation and remind me that they're there. And apart from the low energy levels there are none of the other symptoms. My GP agrees I've had PMR, because of covid19 I haven't been back to see him and he doesn't know why these brief episodes happen.
Adrenal gland - hmm, may be. I'm very active again, but extra activity isn't a trigger, I've been decorating for 8 hours a day with no problems and I don't know what stress is. What does cause me problems is getting very cold, I can't do much for 24 hours or so when this happens. Other people don't understand this as they're often in T shirts while I'm wrapped up. I got very cold gardening a couple of days ago, but I'm OK, if it is the adrenal gland it's unreliable. This makes keeping a diary a good idea, but not really useful in my case.
I know there's no definitive test for PMR/RA etc, I was using it because most people tell me they've tested positive for RA and after stating I'd been misdiagnosed it seemed the best way of laying down a marker. Otherwise people might think I might be making it up. The consultant "wondered" if I'd got "polymyalgic onset RA" even though he went on to note in his last letter 'there were no tender or swollen joints." He wasn't the consultant who diagnosed RA. Right from the first consultation I said my joints weren't painfull, even when I had a flare, but nobody took any notice. He only did the blood tests because in the consultation I sat and stated repeatedly what my symptoms were and emphasised joints were not a problem
What I have got is severe osteoarthritis in my R ankle, after what is described as a traumatic fracture (I fell off a ladder) and this distorts my ankle and foot. The X ray is a bit of a shock, but one ankle doesn't fit any of the criteria for joint arthritis.
LORA (late onset RA) can start identically to PMR in every sense but then it seems to morph later to become more typically RA in maybe 20% of patients - just put this up on another reply to someone:
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