About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts ()

Sep 16, 2011 · polymyositis in Bones, Joints & Muscles

Hi again, thanks for responding. I’m sorry to say that I don’t know much about the disease and from the research that I’ve done it seems like the doctors don’t know too much either. My dad was tried on a few different meds but the one that finally got it under control was the CellCept. While it was free from the pharmaceutical company my dad was the best he had been since being diagnosed. Minimal pain and pretty good strength – for a guy in his 70’s. That with a steady dose of prednisone made a world of difference. My dad can’t afford $900 a month which was the quote from his pharmacy to pay out of pocket with Medicare. Just surfing the Internet and came across a website that offers a few different companies that offer medication discounts/free if you qualify. It looks legit. I’m going to talk to my dad’s doctor and see what she thinks. If you haven’t tried Cell Cept maybe that would be the next step. The site is Needydrugs.org

Sep 11, 2011 · polymyositis in Bones, Joints & Muscles

Yeah, my dad might be mistaken on the two times a year med injection. Glad to hear you’re doing better. Any advice or insight you have would be appreciated.

Sep 11, 2011 · polymyositis in Bones, Joints & Muscles

Hi Cozette, yes my dad has been on prednisone all along varying from 1 mg up to 60 mg a day on occasions with flares. The cell cept was seeming to keep it at bay but when the pharmaceutical company quit providing it for free, he could not afford $900 a month for it and doc didn’t put him on anything else. After about six months off the cell cept symptoms have come back, muscle weakness and discomfort, with CPK at 3000 now. Waiting to hear what doc’s next plan will be. He also had heart problems which required a triple bypass a few years ago – not sure if there was a polymositis connection or not.

Sep 10, 2011 · polymyositis in Bones, Joints & Muscles

Hi Mel, My 79 year old father was diagnosed with polymyositis about seven years ago. Had been controlled on Cell Cept which was provided free by drug co – not anymore. Today he said his CPK is up to 3000 and doc is going to see about getting him some medicine that he gets injected twice a year. Any idea what that medicine might be? Have you had any success with any particular medicine? Thanks.