Hello Joyce in Hamburg (not Germany haha)Also your name sounds familiar but I am not sure if I have exchanded messages with you. If yes you certainly remember my autodidacte English which in these years if not bettered like good wine.
I was DX in 1995 and had definitive biopsy for IBM in 1997.
I spare my story you can read if you want in my profile.
You messages seems a puzzle put together taking pieces from or stories.
I am very blessed because till now my IBM was and is painless. I had just a terrible pain in Fed 2009 when the abductor muscle in the right tight broke. Just to let know you, if necessary, how bastard are some doctors of the first aid I tell you my adventure. When I arrived with the ambulance the surgeon on duty didn't ever heard of IBM, the enormeous hematoma in the tight told him nothing and he let me have a rx in the tight and hip. Than he said your bones are OK, go home. I want call the police, but my "Guardian Angel", my wife Concetta said, not be worried, go back home. Since that night I lost my last freedom (read my story). As regarding the drugs I was under prednisone for many years starting with 50 mg/day but ceasing at all 5 years ago. For IBM nowadays I don't take any drug. Few pills and drops yes, but for other problems as glaucoma, kind gift of prednisone, or typical problems of a common disease of the aged people: the age.
I agree with Isabella (she too lives from this side of Atlentic, EU) the stam cells could be useful for the "next generation" (A serial of Star Trek). Read carefully, I wrote "could" instead of "can". The research are not so easy because the cause of IBM is still unclear (I read that in a recent journal of neurology)
I don't think to be too crude. This is nowadays the reality. I really do hope that for you recently diagnosed may found in few time a valid cure. For now youself can find another valid cure, that for the spirit and the mood. That is easier than you think. Give yourself some rules for the "route" of your IBM as the old sailors with the stars.
An example? "In every day even if not properly agreeable you can find a moment for that tha day is wothy to be lived.
All the best regards and wishes from me and my wife
Giancarlo/IBM - Italy........
I cannot give any medical advice, However if you e-mail or call me, I hope to be able to keep high your mood