Is there mild PMR.
Posted , 7 users are following.
I was diagnosed with PMR in 2015 . Classic symptoms, pain in shoulders and hips. Initially on 30mg and still found getting up stairs difficult in the morning. Later on in day I would feel fine and a bit of fraud but next morning hard to move again. On Eileen's advice I started to take my dose at about 4.00 in the morning. This changed my life and made an enormous difference. I kept to this regime for the next four years and gradually tapered down with occasional hicups on the way. I would say that for the last year or more I had no symptoms but following advice on this forum and elswhere I tapered down very gradually so not to risk either a flare up or too sudden withdrawal from Prednisone. Travelling seemed to bring on symptoms and I would have to increase dose for a while. I finished taking Prednisone in March shortly before having a knee replacement. The timing of this op was partially to coincide with finishing Prednisone. Apparently it is better not to be taking steroids whilst having major op. During my recovery from knee op I've been having problems with stiffness and pain, not in the classic PMR places but in my fingers and legs. It is worse in the morning, but can last all day. It responds quite well to Ibroprufin. I have had tests for inflamation and the results were slightly higher than normal. My doctor said that if it is PMR then I should take Prednisone again. My surgeon said it was either PMR or arthritis and now I am no longer taking Prednisone I am noticing symptoms. He also said the Pred was probably masking knee pain I would have has before my knee op. So, am I now suffering from mild PMR and if so what dose of Pred should I take? Should I just start at 1mg and increase until symptoms go away? I need my hands, I am a mountain guide and strong fingers are essential. On some mornings I can't even open a milk bottle! Or, am I barking up the wrong tree and it is not PMR despite my history with the disease. Or, is it just the normal aches and pains of growing older (I am 64)? My fellow Swiss guides say "if you wake up one morning, and nothing hurts, you're probably dead!"
2 likes, 8 replies
Michdonn hugh79987
Posted
Hi Hugh, I am probably more aggressive taking Prednisone and have had more than my share of flares. My experience is I am better over increasing my dosages quickly in large steps stabilizing and reversing steps. My last episode from 3mg to 20mg, 5 to 10 to 15 to 20, in 3 day steps. Currently on 3mg tapering to 2.5 and totally PMR pain free. Good luck try and stay active and positive. 🙂
Anhaga hugh79987
Posted
Note that Michdonn skis in his 80s because pred has helped him. He is a role model for those who have lost all their fitness and through determination and a very careful regimen have come back.
Michdonn Anhaga
Posted
Anhaga, I think you remember back 2 1/2 years ago when could not walk and was totally discouraged. I was encouraged by the forum to get walking. With the help of a cane and Prednisone, I started 1/6 of a mile at a time. Believe me I never thought I would ski that year, but I did and taught. I am not saying it was easy, but it can be done, never could have done it without the forum. Thank God for the forum! 🙂
Anhaga hugh79987
Posted
The key is your pain responds well to ibuprofen. PMR might be helped marginally, but not enough to make you feel really well, painwise. The down side of this is, if it is indeed osteoarthritis, you shouldn't take nsaids because they interfere with cartilage renewal so in the end we are worse off if we take them on a regular basis. Sigh.
P.S. I've recently read that pred can have the same bad effect on cartilage which may explain why the OA I'd had for decades and was well under control is now much worse. Double sigh.
hugh79987 Anhaga
Posted
Hi Anhaga
I agree about pain responding to ibroprofen, which is why I put this observation in my original post. However, I have now had three days on 5mg prednisone and my fingers are working better than they did with ibropfofen and certainly better than with nothing at all. I am going to go for a few more days and then start tapering quite rapidly down to a dose of pred which seems to control symptoms quite well. Hopefully, I will be able to get down to about 1 - 1.5mg which is what I was on at the beginning of the year before my knee operation. Not only do nsaids interfere with cartilage material (not that I have any cartilage in my new knee - just titanium and plastic!) but they are not great for the stomach either. I have been told by doctors that a dose of about 1mg of prednisone should have very little side effect and so this may be better (especially if it is really effective) than taking ibrofprofen long term or not taking anything and risking damage or health problems caused PMR , if that is my problem, but since there is not guaranteed test of PMR it is difficult to say - at least response to cortisone is one pretty good indicator. It may be OA but then I would have to take something for that - nsaids or methetrexate , but I'm not keen on that either. I'm not sure anyone can give definitive answers to what I should be doing so it seems I just have to experiment a bit and see what works best.
Anhaga hugh79987
Posted
If 1 or 2 mg pred do the trick I think that is probably better than any dose of nsaid! Please keep us updated. Best wishes for speedy recovery!
(And it's not the new joint we're concerned about re the cartilage but the rest of the skeleton!)
hugh79987 Anhaga
Posted
Am now down to 2mg, taken at about 4.00 in the morning. So far so good and much reduction in symptoms, particularly the stiffness in my fingers - a little bit in the morning and then OK. I'll stay on 1mg for a while and see how it goes and then I guess I should try coming down to zero. It's hard to believe that 1mg can make much of a difference when one is supposed to produce 5mg of natural cortisol every day. However I've read in this forum of people having flair ups from very small reductions so I guess the body can be very sensitive to small doses. My doctor friend says that side effects from 1mg are negligible and I shouldn't be too concerned about any long term effects.
Anhaga hugh79987
Posted
Sorry, been away, and my tablet doesn't know my password for Patient (neither do I). I believe prednisone is actually more powerful than our own cortisol, someone posted about that either here or in HealthUnlocked forum. which explains why it's still useful to us even at doses which seem vanishingly small. And although 1 mg is still having an effect on us, the bad effects are very much insignificant while we still benefit from easing of PMR pain.