Finally saw Specialist on PMR
Posted , 7 users are following.
i have been absent from this forum for a few months.
Finally got to see Rheumatologist and it had him baffled at my PMR starting in my right knee. But that's a long story.
I am at present on 9mg Prednisone but on 10 when i saw him.
He told me he wants me off Prednisone ASAP and to drop at least 1mg a month and even as low as 1mg a fortnight.
My GP told me that the level i take should be such that there is no pain.
Hence conflict, but i guess you have to run with the specialist.
I feel I am floating on the edge at 9mg so in one week I will try 8mg and see what happens.
It is in my case, very beneficial for me to keep physically busy, I cycle and go to gym and if i miss a day my chest and shoulders become very tight and ache. Main downfall is the tiredness, easy bruising and constipation.
So that's where I am at presently.
0 likes, 15 replies
peggy_56092 peter48568
Edited
You can only go as low as it is not painful. If painful, it means you have gone to far and the PMR is still there. Your dr must not have read the 2017 Mayo findings on prednisone and PMR/GCA. Google it.PMR/pred use average time is 6 years. Your adrenal glands cease working when on pred. and take up to a year to work again. You cannot suddenly drop your dose like that if you have taken pred for a long time. ElaineH can explain much better.
Anhaga peggy_56092
Posted
Eileen, not Elaine!
Anhaga peter48568
Posted
Are you using a slow taper method so the new dose is introduced gradually? This helps you avoid steroid withdrawal pain which can feel just like PMR until it wears off. If your new pain doesn't go away, or if it seems to gradually get worse, you are not taking enough pred. If the pain comes on quite soon after starting the taper and then over a few days it eases, it's steroid withdrawal and your body is getting used to the new level.
Did the specialist explain why you must get off pred asap? I can understand he might want you to get to a dose closer to what the body produces naturally, but to tell you to wean off asap seems a bit strange. Sometimes a specialist wants to see a patient without steroid affecting their condition. After several years of following the forums I feel this is a very bad idea for anyone with PMR as it is often nearly impossible to get back to a maintenance dose as low the one they were on before having to stop for a while.
peter48568
Edited
Specialist didn't offer any real reason to drop dosage other than the side effects, I have cataracts starting and he said pred speeds up their growth. He was perplexed with it starting in my right knee, then hips, then shoulders.!! but a friend of mine, who has retired as Nurse Manager of our hospital, has been diagnosed with PMR starting in her knee.
Reading more on this forum,I think my GP has the right idea and i will go with him..
Other than feeling tired and sleeping more than i ever used to, which won't hurt i am sure at 68, i am functioning OK.
I will still go to 8mg at end of month and see what happens.
Since being diagnosed with PMR, it's crazy how many people in my small town have either had or have PMR?
peggy_56092 peter48568
Edited
My PMR, started in my knees at the age of 76. I couldn't walk up the stairs. They eventually filled with fluid and had to be drained. It took three months to discover that I had PMR. My right knee was replaced during my second year of PMR, as the kneecap was damaged from previous falls.
PMR, before diagnosed, also showed up as a shoulder tear, solved by a steroid shot. PMR, during flares, sometimes shows up where you have had previous damage.
Two or three years before PMR, I developed cataracts. So pred did not cause them. The 2017 Mayo study comparing an equal number of persons with and without PMR came to the conclusion that those on PMR got their eyes checked more often because of the fear that their PMR might develop into GCA, therefore finding more cataracts. And that the average age for PMR is in the 70's, therefore a time when cataracts might occur anyway.
Anhaga peggy_56092
Posted
How did the knee replacement work out? I am thinking I need to get myself onto the list for something like this as it will be years before I get to the head of the line and already have quite a lot of problems with one knee. (Osteoarthritis-related, not PMR.)
peggy_56092 Anhaga
Edited
I am very happy I got my right knee replaced, although an ulcer bled a day after because I was given a blood thinner--most probably caused by taking Ibuprofen for almost a year before PMR discovery and switching to prednisone. The ulcer and its medication has been my main concern for the last three years.
Now I am facing hip replacement on the left side, osteoarthritis, that was there before PMR. I just got a steroid shot and it didn't help. Can't walk far without pain that shoots all the way down to the bottom of my foot. Dog getting shorter walks. Cane taking a beating. I am considering either hip replacement or COOLIEF, cooled radiotherapy ablation, an out patient procedure at a pain clinic that numbs the nerves. I was told it is mainly done for knees and back pain. Covid complicates everything.
Anhaga peggy_56092
Posted
Oh dear, sounds like the actual operation was successful. but the complications have been difficult. 😦
ann0000 peggy_56092
Edited
Hello Peggy,
I am interested in information about knee involvement, as my PMR also affects my knees. Both my GP and an orthopedic surgeon were convinced it is unrelated, but x-rays show no osteoarthritis in my knees, both are affected, and the pain appeared at the same time as the classic PMR symptoms. Do you know of any research documenting knee involvement? Also, the prednisone has suppressed my neck, shoulder, and upper thigh pain but has less effect on my knees. Should I be aiming for a prednisone dose that controls that as well? I am well into my taper at 4.5 mg and really don't want to go back to a high dose. Thanks!
peggy_56092 ann0000
Posted
I highly recommend steroid shots for the knees. I don't think it affects your pred reduction. Pred is not the steroid used in the knees. Even the hip shot that I didn't think would work, does a bit, enough to let me walk the dog. It is worth having a life. I didn't have arthritis in my replaced knee and once it was replaced, my other knee, although delicate and bone on bone, did not swell or have fluid and is functioning now after all these years. I do have arthritis of the hip and did before PMR. Sorry, I don't know of studies but seem to remember others on this forum who had knee problems.
Anhaga ann0000
Posted
Steroid shots may be recommended because they work very well. BUT be aware that they ultimately cause joint damage, I think by interfering with cartilage regeneration. I have moderate to severe osteoarthritis and have no intention of having steroid shots in any joint unless it becomes agonizing and I am crippled. I get physiotherapy and am in the process of learning to use a knee brace. Things are improving after months of burning pain and rather extreme swelling in one knee.
Diagnosed with OA over thirty years ago when I was 40. Knee OA diagnosed about six years ago with x-rays when I had a tibial plateau fracture, but very mild then. Diagnosed with PMR in 2015 after over a year of increasing pain. Pain not in knees, I should add, but in hips which at least at that time showed no sign of OA, as well as the usual places, like neck, shoulders, thighs. Prednisone since 2015, Starting at 15 mg and a low dose, near 2 mg for about four years now. I would not be surprised if the long term pred has actually hastened the OA degeneration, although it can be used in RA to slow joint damage.
You can test whether the knee pain may be PMR-related by taking a larger dose for a few days, up to a week I think. The recommended increase is 5 mg more than a current dose. Then you can drop right back to your old dose. If you find a marked improvement in the knee pain, then don't go back to 4.5, try something in between and make sure future tapering is very slow and includes knees as a benchmark. But in my experience my knee pain was caused by the changes in physical activity with the covid lockdown because my knees, despite the x-ray evidence, had not bothered me at all. So is it possible your knees are being troubled by something more mechanical rather than auto-immune, and maybe you just need the right kind of exercise to strengthen the supporting muscles? Something to think about anyway. 😃
EileenH peter48568
Posted
It is the most common cause of inflammatory rheumatic symptoms in over 60s!
1951grumpa peter48568
Posted
Your rheumatologist sounds like my retired GP. After having PMR for a few years He would say to me ,re: my rheumatologist " You have to have her get you off those steroids".
I showed him a 2008 study from Italy I had found at the NIH library website that said about a third of pmr patients are still on steroids after 5 years. I think he was a little surprised. In a conversation we had just before he retired he told me none of his patience had ever had pmr so long. He retired before I had hear of the Mayo study. Someone here will provide that link. I've been on steroids since 2011. I'm down to 1mg and am concerned I may have returning inflammation.
EileenH 1951grumpa
Posted
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
are links to 2 articles about the Mayo study - the link to the original is at the bottom of the articles.
Prof Dasgupta - a top expert in the UK - told us in a webinar a few months ago that he often keeps patients on 2-3mg indefinitely as it reduces the risk of relapses.
EileenH peter48568
Posted
Your rheumy is obviously of the persuasion that PMR doesn't last long and pred is bad. IMHO, wrong on both counts.
It is very kind of him to be so concerned about cataracts - which people develop even without pred and which are easily dealt with. On the other hand, after over 11 years of pred, I have no sign of cataracts.
You will find the forum very quiet I suspect - they have made it next to unusable and many have migrated to the HealthUnlocked PMRGCAuk forum which is very active and plenty of experienced hands.