Newly Diagnosed with Polymyositis - Myositis Message Board

tschreib1 · 06-19-2006, 01:56 PM

I am a 36 yo female that was just diagnosed with Polymyositis last month. My doctor sent me to the hospital with a CPK level of 39,000. I spent a week in there on IV Fluids and high doses of Prednisone. I start Methotrexate this week and will be off the steroids in 5 weeks. My CPK level is now 94 and I feel good. I am hoping to never have a relapse again but of course I have no way of knowing if that will happen. I am wondering how other people have faired after being diagnosed and how long they went without a flare-up. Also if anyone knows of any side effects for the Methotrexate I would appreciate hearing that as well. I originally went to my doctor for muscle pain, I had felt like I was hit by a truck. I heard it was rare to have the pain...

cactuslily · 06-21-2006, 03:37 PM

Hi and welcome to the boards. First of all, I am glad to hear you responded well to the treatment provided. I too was diagnosed about 10 years ago. I however, was diagnosed with a mixed connective tissue disease. RA, polymiositis, lupus and features of scleroderma. Personally, I had alot of problems with oral Methotrexate. It gave me horrible nausea and vomiting. When I was switched to injectable, it made a lot of differance. I take 25 mg IM per week, among a slew of other drugs. Typically the meds used are immunosuppressant in nature, so being predisposed to infection is always an issue. Prednisone, while a miracle drug on one hand also comes with a lot of long term side effects, the worst being bone loss. As a woman it is important to make sure you have regular bone scans and take Fosamax if indicated for you by your Dr. Definately something to discuss. I am on huge doses of Medrol, which is essencially prednisone, but it has already been broken down a step. The least amount IMO is the best overall. These are the type of drugs, that long term use means you can't just stop all of a sudden. You need to be slowly weaned. I hope you continue to feel better. Lily

cactuslily · 06-21-2006, 03:38 PM

By the way, I had a LOT of pain, and with that high of a CPK, I would imagine your muscles were screaming!!

tschreib1 · 06-22-2006, 08:48 AM

Yes, I also have MCTD with RA, Lupus, Reynauds and Scleraderma (purple eyelids). I just started the Methotrexate this week (3 pills to start). I've heard it could bother the stomach, I'm hoping not. I didn't have any problems with the Prednisone so I'm hoping that trend continues.

My doctor prescribed Folic Acid to take with it but nothing else. My levels are back to normal (94) and I'm feeling much better. In the past 10 years how many relapses have you had if any? And you've been on the medication continually all these years? I've heard the Methotrexate is very bad for your liver (my doctor told me no drinking alcohol while I'm on it). Do you know anything about this as well?

Thanks!

spirit&truth · 06-29-2006, 07:30 AM

Hi. i'm new to the board and am greatful that there is a medium such as this to share information. I was diagnosed with polymyositis 3 years ago. The first year of giagnosis, after receiving a combination of treatments with Prednison and Imuran, my CPK dropped from a high of 17,000 to 2,000. Although my CPK level never dropped to a normal level, after about 8 months of treatment, I was able to resume a normal lifestyle. However, I had a relapse in 2005, and my condition worsened to the point of complete inability to stand or walk without assistance.

I have tried several treatments, including Cellcept, Cyclosporin, Imuran, and IVIG, to no avail. I have decided to try a new treatment called Rituximab, which is an IV treatment. The first treatment requires an inpatione stay, with a second treatment one week after that, with follow up treatment every 10 weeks. SO, pray for me.

By the way, for those of you that are unaware, your local Muscular Dystrophy Association may be of great help to you in terms of assisting with medical treatment and procuring walking aids such as wheelchairs.