Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
I have just recently been diagnosed with mixed connective tissue disease, predominantly polymyosotis. There does not seem to be a lot out there in terms of people having this. I was diagnosed in about six months by my rheumatologist, along with my bloodwork, I'm not sure if that is an early diagnosis or not? My understanding is that the earlier the treatment the better the prognosis. She put me on 50mg of prednisone and 100mg Imuran, it has only been two weeks and I'm feeling pretty good.
It's pretty scary not knowing what life will be life after six months or a year. At the moment, I'm having some difficulty going up stairs in the afternoon. Does anyone know how long before results would be seen?
I'm just looking to hear other peoples stories and get some hope. Tomorrow, I am getting a muscle biopsy. Really not looking forward to that. It sounds like they need it to confirm my diagnosis and use as a benchmark?
Are there other people out there living a fairly normal life after this diagnosis?
It's pretty scary not knowing what life will be life after six months or a year. At the moment, I'm having some difficulty going up stairs in the afternoon. Does anyone know how long before results would be seen?
I'm just looking to hear other peoples stories and get some hope. Tomorrow, I am getting a muscle biopsy. Really not looking forward to that. It sounds like they need it to confirm my diagnosis and use as a benchmark?
Are there other people out there living a fairly normal life after this diagnosis?
I have been living with dermatomyositis for the last 12 years and life has never been the same. I was in remission for 5 of those years. I started off taking Prednisone but never ended up taking immunosuppresants. Prednisone worked pretty quickly for me. Within about 3 months, I had most of my strength back. But once I weaned, I got worse than ever. Rash came back with a vengeance and so did the muscle weakness..
I chose to never take immunosuppresants and chose to follow the low dose antibiotic protocol developed by Dr. Thomas McPherson Brown. Most of these diseases are caused by mycoplasma bacterias. After 18 months on the Antibiotic protocol, I went into remission for 5 years and was on no meds at all.
I have started back on the protocol just about a week ago. I actually flared 2 years ago but refused to go on any pharma drugs. Instead, I tried different natural approaches; hoping to control things without the use of meds but I didn't succeed.
Gosh, I will never forget the muscle biopsy I had. Boy, it was painful afterwards but nothing I couldn't handle.
I am glad that you were diagnosed early. Some people take years to be diagnosed.
I wouldn't get caught up with worrying about the future; you'll just drive yourself nuts. I try to just live for the moment.
My life has changed a lot since becoming sick, but I have adjusted. What choice do I have? I just feel sorry for my family; especially my kids. Sometimes, I feel like 1/3 of a mom. LOL But at least I show them lots of love and that's all that really matters anyway.
Well anyway, welcome again. And best of luck to you.
Suzanne
I have never heard of the Dr. McPherson Brown protocol - low dose antibiotic. I'll have to look more into that.
Thanks for the message