Hello, my name is Traci. I am in the beginning stages of diagnosis for polymyositis. I understand that is a general term for muscle deterioration and there are other names specific to the condition. Anyway, doctor wants to put me on prednisone for inflammation but the doesn’t stop the muscle deterioration. I’ve look up several medications for treatment and side effects all involve cancer or liver damage. We’re you on multiple medications for your treatment? I’m not happy with my treatment options. Also, did you have a muscle biopsy? MRI? Or something else?
Thank you for any direction you can offer. 🤗
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
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.
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Hello, my name is Traci. I am in the beginning stages of diagnosis for polymyositis. I understand that is a general term for muscle deterioration and there are other names specific to the condition. Anyway, doctor wants to put me on prednisone for inflammation but the doesn’t stop the muscle deterioration. I’ve look up several medications for treatment and side effects all involve cancer or liver damage. We’re you on multiple medications for your treatment? I’m not happy with my treatment options. Also, did you have a muscle biopsy? MRI? Or something else?
Thank you for any direction you can offer. 🤗
Thank you for your information. I will look into CellCept and drug website. I will pass the info on. I hope your dad continues to feel well! Traci
Have you tried Needydrugs.org. I was told they help with meds. Hope this helps.