Mayo Clinic Connect
Anybody out there dealing with a child with polymyositis
I was diagnosed with polymyositis in 2003. If I can help with any question’s just let me know.
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.
I am not sure of one that is just two times a year, I know the solu- medrol is done a little as possible. I think they use to try to get it back to a more manageable level. If that makes any sense.
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.
Hello, this is cozette’s son replying on here. @mel besides what the doctor’s instructions, what have you been doing to keep yourself from letting this disease take over? Also, what medicines have the doctors perscribed to besides the usual predisones and cell cept? @Bon is your father on predisone as well?
Hello, when I was first diagnosed I had a CPK of over 13,000. I was given methotrexate and large doses of prednisone. I had a lot of heart involvement, plus trouble swallowing and all the trouble with muscles getting out of chairs , climbing stairs, raising my hands above my head….it continued to get worse, so the gave the solu-medrol infusion for 3 days and it finally calmed down, but I had a lot of heart damage. I was pretty maintained on the prednisone and methotrexate, but I eventually required a heart transplant, which I got 4 years ago. Now I am on alot of immunosuppression and haven’t had any problems with the polymyositis. Sorry kind of a long story. It is such a mysterious disease and very frightening. There are not too many people have ever heard of it.
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.
Hello again Broncomom, this is cozette’s son. I’m glad to hear your father doing well after his triple bypass. I’m just like you waiting to see what my doctor is going to do next in helping me dealing with this disease. As of now, my strength has gone quickly after all that time in physical therapy. I also have a blood test coming up soon. Plus, I’m getting tired of seeing my mom sad because of me and this disease. I already know the details about it, but if possible do you know anything else about polymyositis. Any info will be great fir me. thank you
Hello again Mel. I’m already on prednisone, but I’m not methotrexate. If solu-medrol is the stuff they give as an IV in the hospital, then I was givin that too for a day. Are you still in physical therapy?
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
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