Pmr, Rheumy,Pred and GP's

[KCRoyals]

Wow, I was diagnosed about 2013 with PMR when the private physios decided it was not something they could work out what the problem was. No refund. Went to a NHS Physio who in 5 minutes realised it was most likely PMR, did a blood test which showed PMR as the most likely culprit and sent me back to my GP armed with this advice. I was then put on starter dose of 15mg Pred and tapered down to 5 and kept on these for a few years. The thing about Pred is that it is a miracle cure at the beginning but like Newton's Third Law of Motion there is a caveat. Luckily I never had many problems with it apart from when I tried to come off when I still had PMR. Gave me a false sense of security I had got rid of it, but incorrectly. About 3 years ago started to visit an excellent Rheumatologist who was convinced it had actually gone as the C Serum Protein showed no inflamation although the ESR was a little elevated. He decided to keep me on 2mg and over the next couple of years and then onto 1mg and now bingo I am off them and not showing PMR symptoms.

I started to lose weight which I probably gained during the Pred Years and now the pains are due to ageing wear and tear which is what my Rheumy thought.

Heard some not great things on here about Rheumys but if you get a good one like Dr Grant at Sheffield RHH you will feel really confident of their diagnosis.

Love this site and will keep checking how you are all keeping.

ps not sure whether it can reappear.

[SheffieldJane]

That is a heartening story. We can relapse but let’s not think about it. You will recognise it and be on the case quickly I imagine.

[KCRoyals in reply to SheffieldJane]

Hi Jane, not sure if I will or confuse it with old age wear and tear. Can remember when I first had it and couldn't move my arms, now that was scary. I'l keep on checking this board as many have become part of my psyche. Problem with hitting 70, aaarrggghhh from a mod, is that so many things can occur. Still should be grateful to have made it this far. All of you keep well.

[SheffieldJane in reply to KCRoyals]

I find PMR pains most particular and unlike my osteoarthritic knees for instance and of course they tend to be bilateral. Let’s hope they never darken your life again.

[Carriemetz]

Celebrations! Heartening story and a decent rheumatologist! 🥳 here’s hoping we all do as well in the end by our differing routes. Enjoy! And thanx for posting.

[PMRpro Ambassador]

"ps not sure whether it can reappear"

It can unfortunately - on another forum I have at least 2 friends who have had it twice with 4 or 5 years between but both have been off pred for 5 or 6 years since the second lot.

[Predsharer]

Good to hear you are back on form. Don’t worry about the PMR coming back, life’s too short to worry about what might happen😊