My Story and Yesterday's Dose of Pred.

[Trevgrrl]

Hi everyone, I have often read this forum or another like it. I would like an opinion on my story, if possible. Thanks and sorry for my spelling laziness..

Story of Polymyalgia Rheumatica

First I developed what was eventually diagnosed as fibromyalgia at 34. Then had endometriosis and got a hysterectomy at ago 40. Then a left knee replacement. Then a right knee replacement. While recovering I scooted on a bath bench and hurt my back; I had two kyropastries and a third fracture that was left to heal by itself.

Finally about 2010, when I was about 57, two years after my husband died, I felt a new kind of pain, more intense than the fibromyalgia. This pain was through my shoulders and waist, arms, legs. I went to a rheumatologist and he put me on some prednisone to see if I had what he called Polymyalgia Rheumatica. Over the next few days, I felt brand new.

I gradually reduced the Pred to 13mg, but after a bad pneumonea, I went up again to 25mg. Now for the last five years I’ve stayed high on prednisone. I got down to 16 recently, but then went into the nursing home with what the drs thought was my fracture in my back. But I noticed the pain was fierce in my shoulders, arms, waist, hips, legs, just like the bad Polymyalgia. The xrays didnt show that the fracture was any worse, but I spent a month lying flat with horrible pain in my shoulders and neck mainly. The drs don’t want it to be Polymyalgia, I guess.

But yesterday, here at home, I accidentally took two doses of pred. That is 38mg. By evening I felt completely normal and free of pain! My mind stopped obsessing on my health. I read my book, played on the computer; I was myself again!

This, along with reading the papers from my rehab nursing home saying my back fracture wasn’t serious after all, I feel I have PMR again, or it never left, that the back problem wasn’t necessarily caused by Pred., I wish I could get help . Is there anything to do besides prednisone nowadays?

[Scotsman53]

Hi Trevgrrl, that's quite a story! It seems prednisolone is still the main treatment option, though it can be combined with other drugs. There's some good info here: nhs.uk/conditions/polymyalg...

[Jo_Lyn]

Hello Trevgrrl... My doctor thought I had PMR sometime back so I looked on this forum and found this, PMRGCAuk group. Has anyone told you about it? THE best people on here and the group is very active. I highly recommend it if you haven't been there yet!

As it turned out my diagnosis of PMR was never confirmed so I am not active in the PMRGCAuk group anymore.

JoLyn

[Trevgrrl in reply to Jo_Lyn]

Thank you. I think I was trying to find this group and got this one, which used to be very active, I think. Anyway, thanks. I hope you are doing OK>