I thought it might be helpful to some of you to post my experience of PMR. I was diagnosed June 2020. Prednisolone 15 mg were prescribed. I was a fit male 76 yrs. The pain disappeared overnight but I was not prepared for what happened next. I gained weight 2 stone. I was exhausted all the time everything became a challenge. I was lethargic depressed anxious tearful totally unable to motive myself. It was dreadful.
However the good news is I persevered tapered the drugs and now 10 months on I have been drug free for 3 weeks. I am gradually increasing my excercise and regaining fitness. One lasting effect seems to be my thin skin. I cut and bruise very easily this is also part of ageing but has been exsacerbated by the steroids. It is a truly dreadful desease but stay focussed be determined excercise as much as you can but not to excess rest as often as you feel the there's light at the end of the tunnel, I now describe myself as CURED. Good luck
I am sorry that you had such a tough time and pleased that you have managed to find a way through. I use a plain base cream daily to build some resilience into my skin. Thank you for sharing your tips.
You have done really well thus far - only 1 in 5 patients with PMR are able to get off pred in under a year. I do hope it continues so well.
But beware - you can rarely say an autoimmune disorder is "cured". The propensity for the immune system to go haywire again remains and sometimes even 1mg per day or less can be enough to keep the inflammation under control but when you drop to zero the inflammation builds up again and may reach a level where you develop symptoms again.
You seem to have tapered and been pain free very quickly, just be sure it's not too quickly. I started on 15mg 4 years ago and am now only able to function almost pain free on 3 mg and a few flares inbetween.
Hello Billhill, I am so glad that you seem to be getting on well. It is so scary, I started my taper from Preds too soon but now seem to be getting on well. I think the warm weather has helped me.
Well done you! Not many are clear of steroids that quick. I have tried several times to taper from 15mg after 18 months. I am on a slow 24 week taper and now on 3mg. So far this time it’s working. I hope you continue without steroids. I put on 2 stone and fighting to lose it.
Well done I’ve managed to taper down to 5 mg still have pain in my hip and shoulders, just had another steroid injection today, last 1 I had was just before Xmas seemed to work.
How long exactly were you on the prednisone and how long exactly did it take you to taper off and at what increments? Also did you change your diet any?
Hi it took 10 months took 15 mg for 4 weeks and then dropped to 10 mgs after 6 weeks on 10 I tried 5 mgs but it was too much too soon I had to go back to 8 so at 12 weeks I was on 8 mgs and this was maintained for 8 weeks So at 20 weeks I was on half the original amount. I then reduced by 1/2 mg a week. Reaching zero the last week of March. I have my tounge in cheek when I say I am CURED. I realise the inflammation may build up again. I am currently on day 20 without any meds. I do have some aches and pains but these are nothing compared to PMR. I have gradually increased my excercise either golfing or gardening.
My food intake has reduced I never have breakfast I vary intake at lunch time but always have a two course dinner. I don't think my diet is suitable for everyone but I have eaten like this for forty years and I am used to it. I have shed 9 lbs in the last 3 weeks. I expect to lose a further stone by Christmas. I have no Idea how this will all pan out but I am determined which I hope will get me through. Regards
Well done. I’m aiming at 18 months! Was going to be one year but developed inflammatory arthritis and it kind of slowed things down a bit! But I walked a mile each of the last five days and I’m gardening. But i put on 2 stone, have shifted the first half a stone but a long way to go! Good luck, S x
So glad you’re feeling better and feel you are cured. It came at a bad time for you, with the pandemic, and good to hear you got through it. When i was diagnosed with PMR, 2019, the doctor pressed me to take Prednisolone but i could not bring myself to. I even went to the hospital canteen to take them in case of a reaction, i was so terrified. My doctor tried to bribe me with the promise of bone density scan( which i was entitled to anyway). Struggled through, year off work and in the end went to acupuncture, with prescription powdered herbs ( yep, i was suspicious, too). At the time, my markers were very high and it was a scary period.
As of January ‘21, markers are normal, although i still have some pain. I am approaching 69, so aches are pretty normal i guess, but i am not the same. Something happened to me, my energy levels and mood, but my instinct was against steroids.
The outcome may well be the self-limiting nature of PMR and the course of the disease. I found acupuncture to be of benefit in areas surrounding the symptoms and how to manage them( nothing from NHS), and i do believe the herb helped in recovery.
That’s my story and i’m not advocating alternative medicine, but steroids are relatively cheap and, as the disease is predominately found in women of a certain age, not a great deal of research appears to be going into into it.
It’s a question of whatever gets you through the night, but my mind was settled when a gp in the surgery, asked. ‘Oh, are you still taking steroids?’
He really didn’t know.
It really is a case of who you can trust in the time of need.
"not a great deal of research appears to be going into into it."
There is actually a fair bit - although some aspects are as part of wider ranging autoimmune research. Unfortunately it is difficult to develop or repurpose drugs until you know what the mechanism of the disorder is - and that isn't easy, especially when it is beginning to be thought that PMR isn't just one disorder but a group of problems that all cause similar symptoms.
Understand your reluctance Rue9 but I wonder if the aches and pains you suffer are normal or PMR getting a grip. It's an insidious disease and the inflammatory condition cripples so much of our body's ability to stay in balance. Since pred. I have noticed everything that I ascribed to getting older and suffering from my cycling getting better. I can genuinely say that I can discern the difference and all the contracted muscle causing so much stiffness and pain in joints has gone. All muscles are working now as they should. I think the problems associated with pred. are worth the benefits it endows. Building back wasted muscle will be slow and painful (as all muscle regeneration is) but worth it. 40 years ago I watched my father's body be slowly destroyed by unregulated and irresponsible use of prednisolone. It was sickening but then they knew so little and we have learnt so much since.
In answer to your question, my overall pain, esp shoulders, groin area and back, the weight loss and general malaise was identified by my G.P. as PMR and the steroids were enthusiastically prescribed .As mentioned, i didn't take them and chose a different route.
Recently I got bitten by a cat and needed an operation on the infected hand. Blood was taken, markers still down, but the Xray did find arthritis in my hand.
I still ache badly, from time to time, occasionally debilitated, but it seems not to be PMR if the symptoms require raised markers. Back in the worst days, the c protein was 66 and the other about 32.
In terms of muscle loss, this may be due to lack of exercise if laid low.
I’m certainly not the same, including lack of confidence. It is possible this was/is something entirely different. Embarking on a steroid plan, with such vague diagnosis was so stressful, it became than the disease.
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