I find it hard to get back on this site
Posted , 7 users are following.
i dont know if i am on the right site for POLYMYLAGIA RHEUMATICA ? forumi will await some replies .
thanks
margaret
0 likes, 4 replies
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Notes on I find it hard to get back on this site
EileenH margaret89358
Posted
You are - what's up now? I've not had notifications of new posts today and then suddenly they started again. What a b£**&^ disaster...
freda07782 EileenH
Posted
Before this website crashes out completely , I would like to thank you EILEEN, for your patience, advice and encouragement you have given me over my journey with PMR. When first diagnosed in January 2017 i had no idea there was such a miserable disease. I've been very lucky compared to what I've read from other members of this forum.
i was started on 20 mg Prednisone and the relief was immediate. I was thrilled and it was only later on i found out the complications of taking PRED. this forum has taught me so much more than any doctor has . its been comforting to read and be part of this group who understand just how and what the worries are with PMR and how to get off Pred.
I'm now down to .5 mg and going for a blood test in three weeks time to make sure my inflammation markers are good. then I believe if all is well I can continue taking .5 with bits taken off gradually. ive been nibbling away at the half to try and reduce by 1/10th . I'm hoping i don't have a relapse like is mentioned of folks who get off after only two years.
So thank you everyone and especially Eileen . sorry for the lack of capital letters. its not easy to type a message anymore . it was a wonderful site when i first found it, but I'm afraid its going downhill fast. its a shame!
GOOD LUCK EVERYONE! Freda
EileenH freda07782
Posted
Thank YOU Freda - and all the best for that last 1/2mg. I know a few people who managed off pred in a couple of years and I think they tend to do very well.
As I've said before - at least now this isn't the only forum any more. HealthUnlocked has an extremely active one, even if it is a bit more mad than here!
peggy_56092 margaret89358
Posted
You got me. I think I just answered you on another post and had difficulties typing my response about MRI experience.And I found another message that you couldn't get into. Forwarded it to Emis.