my first post, so will start with a short introduction. Am 59, male, and was diagnosed with PMR in Nov 2014 at 57, though had symptoms for at least previous 6 months. Started pred. at 30mg and am now at 4.5mg. My blood results are good and, of course, rheumy wants pred. course to end in 4 months. No comment necessary.
For the last approx. 8 months have had pain in the shoulders, upper arms, knees and, at times, chest and neck. Quite a catalogue. The knee pain in bed can be excruciating. Drs have diagnosed 'wear', arthritis and 'the usual aches and pains of someone your age'.
Besides pred. I was prescribed pantoprazol and vit. D from the start and, more recently, celebrex, which had no effect, and cocodamol, which helped, but can't be a solution. I had acupuncture on one knee and physio. on one shoulder - neither of which was effective.
It's a first post, but have been looking here for advice and wise words for well over a year. What would I do without ii?
Any thoughts or comments would be much appreciated.
Bill
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billdmith64
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If you've got PMR-type pain in the shoulders and upper arms, then it would seem that your steroid dose is too low to contain the inflammation causing the pain. Having said that it is known that steroids at a higher dose can mask the pain of osteo-arthritis pretty much anywhere in the body and a combination of the two conditions can muddy the waters very much.
You say you have tried physio, but I rather think for your painful knee what you need are exercises. Exercises to strengthen the muscles around the knee are invaluable if the 'wear and tear' (a description I dislike) means you are not able to exercise in any way at all. PLEASE note the distinction between exercises and exercise, they are not the same at all.
If you were to be referred for a replacement knee, they would be asking you to do the exercises beforehand and very definitely following the surgery and the more you do before surgery the less you have to do afterwards. That's how I found it and my 'new' knee is now 10 months old. My 'new' hip is two years old and going strong!
You could try a higher dose of steroids for a few days to see if that helps overall, but I think you may find the knee really will be the better for some exercises specifically designed for the problem.
I'm sure there is an Osteoarthritis site on here, a look at that may give you some tips.
Hi Polkadotcom, many thanks for your really detailed reply. In the meantime, I've increased the pred. to 8.5mg and had already started doing exercises, mainly for knees and shoulders, some weeks ago. It's too early to say how helpful they are. But increasing the pred. has definitely helped. That was the third time I'd got down to 4.5mg.
The arthritis showed up on an X-ray, tho' apparently at a low level. I'm sure the pain I feel can't be explained by the arthritis alone, if that makes sense. Bill
Hi Bill I had really bad pain in my knees, they would freeze on walking kept me awake at night always sleep on my side couldn't put one knee on top of the other, bought a knee cushion to keep knees apart, went to Rheumy 5mth later he looked all over my body, he said I had osteoartheritis said the best thing I could do would be to loose some weight take pain killers and sent me to see the physio, had x-rays on knees went to see physio she looked at knees and x-rays said I had no sign of osteoarthritis wasn't anything she could do for me as it was all inflammation, had another appointment with Rheumy saw a different one this time, by this time my arms,neck shoulders and thighs were painful, this Rheumy put me straight on 20mg of pred within 3days I wanted to dance,, ok until started to reduce then pain came back all over, sorry about the long essay, 18mths later reduced preds down to 5mg couldn't move, went to Rheumy told him I had had enough of pain, then tried methotrexate liver enzymes went up next tried me on Leflunomide with in two weeks finally pain in knees disappeared wonderful have been on it 6mths so far all the pain swelling from knees, legs, ankles and feet disappeared, one gp told me you don't get PMR in you knees, hope someone else with more knowledge on here can help you. Val
Hi Val, thanks for the interesting reply. It's fascinating how much time and effort we have to invest before we get anywhere near a satisfactory solution. The gps I saw had no idea what the problem could be and in the end, I diagnosed myself on the internet.
The painful shoulders mean I have to sleep on my back which is really uncomfortable for the knees. The Leflunomide sounds interesting . Will definitely look into it. Bill
Hi Bill, we are of similar age , I am 57 soon and was diagnosed 2 years ago , same old problems with pain mine was shoulders hips and back , just like you good bloods docs blaming arthritis etc , I have had both my shoulders repaired now rotator cuff wear which is common in men our ages. I can deal with most of the pain except my lower back it stops me in my tracks some days and as a martial arts instructor and working full time in engineering it just dictates my life . The last 6 months to aid my reduction pains the Rheumy prescribed Arcoxia, it's a rheumatoid arthritis drug it's very good for pain in general , I try not to use it all the time as just like any anti-inflammatory pain killer your body adapts and the dose has to increase to get any relief . Just a thought it might just help you also ask the GP. Good luck
When I first took Arcoxia it was brilliant it took away all my hip and back pain , but the longer I am taking it the less it seems to work , just reduced this week to 3.5 mg of pred from 4 . I have only taken 1 Arcoxia on Sunday morning waiting now to see if the pain comes back usually takes me about 4 to 5 days after a reduction to feel the pain really bad in my hips and back . The pain isn't worse st night when I stand or get in and out of the car seems the worst, with extreme stretching I get a little rest bite from the pain .
I'm fascinated by your replies to Bill. So much rings true. I'm 69 and have "Massive Rotator Cuff Tears" in my right shoulder - both spinatus tendons severed. I've been on pred. for 22 months and determined to keep the dose as low as I can (now on 4.5mg), despite putting up with quite a lot of stiffness and discomfort in all the usual places. I'm sure that it has weakened my tendons. One is warned of this in the long list of side effects on the box. My osteo. surgeon, who I saw before Xmas, says it's a mess and doesn't think surgery is an option as the injury is "acute on chronic" and the tendons will tear like paper. So I've been doing Torbay NHS based physio exercises as instructed, and see him again next week. I'm worried now that my left shoulder is also damaged but when I asked the rheumatoligist, who I also saw before Xmas, if she'd refer me for an MRI scan on that one too she declined as she said there wasn't a clinical reason to do it. Do you mind sharing how you were diagnosed?
Hi Bill and welcome! I have had PMR since 2012 when I was 52. In the last 2 years, both knees have become very painful and in the last year so has my right hip. The pain is almost unbearable and constant. My right knee was diagnosed OA 2years ago and the left knee and right hip were also diagnosed OA a year ago. Have had numerous steroid injections over the years which helped a lot at the beginning but now less so- I am hardly walking now. I have also lost 4 stone which again helped initially but not now. The worst pain has been my left thigh and no-one could tell me why this was so sore. It also stopped me from doing the classic knee exercises as my gluteous muscle was so tight and sore. Tried everything including Bowen that just brought on a flare due to massive pain.
Now, my Osteopath is wondering if the thigh pain is due to the hip problems and even whether the knee pain on that side is exacerbated by the hip. The difficulty is knowing what is causing what!! and therefore what to do about it! I don't want to have my knees replaced only to find that it is not them causing the pain. Painkillers don't work at all except co-codamol at night as it helps me to sleep through the pain.
I will be seeing my Rheumy on Friday, hoping he can work some miracle on the joint pains. I was angry to read your post that the doctor dismissed your pain as a factor of age- you're not that old and that is not good enough!
I really wonder how many of us with PMR/GCA get OA as a secondary condition? It seems to me that a lot of people here have OA as well and I know it is miserable.
I was told I had OA in the very early stages of PMR. There is no evidence at all of any OA now. PMR and myofascial pain syndrome causing muscle spasm - treating them means I really am pretty much pain-free.
I have had osteoarthritis in both left hip and right knee, very successful replacement surgeries for both. They were both one-offs (I don't have it anywhere else) and were due to congenital birth problems.
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