Have posted few times before started PMR journey Oct 2016, now tapering to 4 mgs pred, I am now 76 yrs old, have had a lot of traumas through last few years bit my question is, many people talk about painful parts of body, wrists, neck, back , hips etc , through years in many cases, but can all these issues be PMR related or could they be as we age forms of arthritis, degenerative disease etc, since markers are not necessarily proof PMR is still active, how would we know all of our pains are caused from PMR, and would varying doses of prednisone not influence our painful conditions even if many of us suffer with forms of arthritis, degenerative disease, and even calcium deposits in shoulder joints , from aging , wear and tear, After years of prednisone as some of us have been on, just thinking PMR could have left usvand we suffer with other debilitating diseases?
PMR or Arthritis: Have posted few times before... - PMRGCAuk
PMR or Arthritis
As you can see on your screen, hopefully ,you are not alone having these thoughts. Especially when you are down at the low doses. The Adrenal recovery also clouds the picture and the loss of physical fitness. I have signed up for a joint pain exercise programme and I am waiting for an endocrinologist appointment. I will see if this helps.
I think it is a very relevant thought. I suspect there are many of us on the forum who suffer from other problems, as well as the usual problems we get from just getting older. I have lived with OA for many years, it's generally fairly well under control, but every now and then it can get more grumpy, can be exceptionally painful, particularly if it's my back, but I think I'm pretty good at deciding/which pains are PMR related and which aren't. Hands and wrists are CTS, which was kept under control by higher doses of Pred but as I'm now on a low dose they need sorting. I'm awaiting surgery for them. Could be off Pred by the end of the year (no promises) and it will be interesting to see if/what anything else makes itself known. Just changed doctors as well so that could also be interesting going onwards. One other thought is that when, being positive here, I'm off Pred I could go back to Naproxen, which was by far and away the most effective medication for my OA.
I am in the same mind of going back to Naproxen. I’m 76. I was on 15mgs May 2022, down to 1mg for the past 2 months, just today decided to go down to 0.1mg, let’s see how it goes. I have osteoarthritis and was taking naproxen as and when needed and quinine for irritable legs, both of which I had to stop once prescribed prednisolone. My rheumatologist advised me to go down again and has not given me another ftf appointment but a telephone appt to see if it goes to plan later in the year. My one worry is pain up left side of neck which I am making a drs appt for. So all in all I hope soon to be off prednisolone and maybe back to naproxen.
"My one worry is pain up left side of neck "
Have you had a look at sternocleidomastoid syndrome? It is a very common cause of neck pain and can even mimic GCA symptoms!
youtube.com/watch?v=_BGczs_...
explains its position well and also shows some stretches.
This is also good
since I was diagnosed, 4 years ago, with PMR, I have ‘acquired’ the following?.. Trochanteric bursitis, Hypermobility, Raynauds Syndrome, Sciatica, Essential Tremor, Haemangioma (spinal), Orthostatic hypotension, Dry Macular Degeneration, Carpal Tunnel Syndrome, Plantar Fasciitis. But I also already had fibromyalgia & the initial start of osteoarthritis, hereditary from my father. My OA is spreading quite quickly now, confirmed by my Dr this week, but I’m now older, so think that’s why! However, I do think about & try & sort, one ‘disease’ from another, & which pain is caused by what! They each have different symptoms, but, in the main, have pain that is not controlled by steroids. For me, the difference with PMR is that there is a wonder drug called pred which, despite its bad side effects, does help! I’m sure it helped my OA at higher levels, but does not help now I have tapered to 2mg (& OA has spread). You’ve been on the forum long enough to see how many questions arise concerning other diseases, I think! Are they connected? I’ve wondered that, but decided it does not matter to me, tbh. Each one has its own symptoms, it’s own treatment, separate to PMR. For me! Others may feel quite different.
I did a very slow (6 month) taper last year from 5mg to 4mg, arvine. Part way through I got the return of some of my 'normal' symptoms (neck and shoulder, buttock pain), so I decided that I was having a flare due to going too low with the Pred. I WAS having a flare, this was confirmed because my ESR went from 8 to 22. So I did the usual thing, added 5mg for a while, then dropped to 5mg. However, whilst my ESR dropped to 5, the aches and pains remained. Rheumy asked which bit hurts the most and arranged a scan of my cervical spine. There was no inflammation! There was evidence of a lot of wear and tear on my neck. However he also said that sometimes aches and pains initially brought on by an autoimmune condition can become chronic. For instance, the pain in my buttock is ischial bursitis; the inflammation has caused the bursa to thicken and although the inflammation isn't there currently, the bursitis remains. I feel like I'll need to be Sherlock Holmes to decide whether or not I'm having a flare in the future!
I’ve had 3 bone scans since my PMR diagnosis (May 1/18). The first one was 1 month after diagnosis to establish a baseline, the next was about 2 years later, both were ok. The last one was done in 2022 and revealed borderline osteopenia and my GP discussed taking AA to which I shared I did not want to take it. He provided me the option of increasing calcium in my diet but warned against not taking too much supplemental calcium as doing so can have negative fallout (causing other health issues). He also recommended more weight bearing exercise (at that point I was more often in the pool doing exercise). No need for a weighted vest here….I have plenty “organic body weight” already!
I now eat more yoghurt, cheese, bok choy, dark, leafy greens, almonds, etc. I also try to walk more and if my body cooperates I’ll try to walk more of the golf course this summer as opposed to riding in the cart all the time.
Of note, I have been on a pred dose below 10mgs for all but the first 8 months of my PMR journey. With my drop from 6 down to 5.5 of pred the OA pain in my knees has started to emerge again (I had it prior to my PMR diagnosis). Sore quads also emerged from this latest pred drop. Both of these symptoms work directly against my efforts to walk more (sigh). Eventually I will need total knee replacements.
Do you know what your t-score was for "borderline osteopenia"? Down to -1,6 it is not recommended that bisphosphonates be started. and that is almost halfway down the range. I do feel a lot of doctors want to initiate them far too soon.
I don’t remember the exact numbers of my last bone density test but do remember the diagnostic category said “low bone mass, osteopenia bordering on normal”, and my 10 year fracture risk was low (less than 10%).
It was more of a discussion of options rather than recommendations. We settled on some lifestyle changes as opposed to any medications. We’ll see what the next scan brings although I don’t qualify for another one until Nov/25.
Thank you, well I will have to check with dr seeing him on wednesday re the Tscores, and risk factor in 2021, Im hoping the prednisone for so long, 7 1/2 years has not done damage, Im sure the tears I have experienced in muscles are a result of long term prednisone, so just curious, havent been taking calcium for long time and dr s of course have not much faith or interest in supplements, has been my experience, I believe aging and lifestyle has also contributed to my condition in last year, and am seeing the ortho specialist who works with the spinal decomprssion centre one day a month , to look at my recent MRI to determine if I can start back on spinal decompression treatments for degenerative discs , in lower spine, which now is affecting my everyday quality of life, lower back seizes up, painful after walking any distance or simply standing and working while cooking etc, also spinal stenosis a factor causing pain, I have been doing some warm water therapy, but the facility only offers one day a week, better than nothing but at least some movement in water for an hour
That's the $64,000 Question! Since PMR is predominantly a disease of the elderly (the average age of diagnosis is about 72), and its root cause is unknown (it's one of many autoimmune diseases that responds to prednisolone), some overlap with other diseases is inevitable. A big clue is in the name: polymyalgia means "pain in many muscles". That distinguishes it from arthritis, which means "disease of the joints". The fact that the shoulder and hip joints are surrounded by large muscles, whose job it is to stabilise the joint, can confuse the diagnosis.
It is possible I suppose, I have been taking prednisolone for 15 years and after trying tapering a number of times am now on a maintenance dose of 5mg, whether I still have PMR is another question.
thank you, I have been taking for 7 1/2 years, had tapered to 4 mgs by Dec 2022 but jaf GCA symptons then, fheumy put me back to 40 mgs, have been taperin again by next week be down to 4 mgs a day, however, have had many issues iver last year or two, nerve entrapment L2L3, some rears in glutes hamstrins and around hip joint, and now bone densitytest dexascan sowed low risk fracture 3 years ago now high risk fracture, my gp agrees pred contributed to that, so dontthink pmr still there but osteo etc and rheumy agreed, still tapering a slow process, have you had any of these issues being on pred for 15 years?
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