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.
Time to rock the boat a little...the horrible predisone taper...i luckily didnt have to do it all the way. when i was on about 10 mg my doctor decided to switch to acthar gel..when i switched i stopped the predisone completely...no side effects that i felt...just improvements from he acthar. then i finished my 6 weeks of acthar and have been med free since. a few months ago. this makes me think that there obviously is alternatives to the taper..why isnt it offered to more people? i mean i know the cost is outrageous but doesn't the potential side effects of the long term steroid use cost a lot if things were to go wrong?? is it just that there is not enough evidence that treatments like this can be successful??
also i have read that in 20% of people DM/PM be gone after just one case or flare up. 2 doctors have told me front he beginning that mine should go away and i should be back to 100% eventually. i hope its true but there are a lot of people who believe it will never go away. i have no over laps known currently. is it how i got the DM that makes the doctors believe it will go away?
thank you for reading and all responses :)
also i have read that in 20% of people DM/PM be gone after just one case or flare up. 2 doctors have told me front he beginning that mine should go away and i should be back to 100% eventually. i hope its true but there are a lot of people who believe it will never go away. i have no over laps known currently. is it how i got the DM that makes the doctors believe it will go away?
thank you for reading and all responses :)
I believe some people could get off Prednisone IF they are on a sparing drug that works and they are willing to accept some pain and loss of mobility. That is how I got off. There was no doubt after 5 years on Prednisone, my body had a steroid dependency.
I've heard that some people never flare again or that they go along time between flares. I would imagine it is because of a certain subtype of Myositis they are still learning about. Just like some have a Jo-1 marker but not all. Seems to me like there are different types of Myositis besides the big 3 categories and we are just learning as we go.
I think the important thing is to work close with your doctor and be partners in the process.
There are some forms of DM/PM that are mycoplasmic based and can be cured with antibiotics. Mycoplasmic based DM/PM is not the autoimmune form of the disease. There are also some people who will have a cancer at the time DM/PM presents. When the cancer gets cured then the DM/PM will go away in some people, but not all people. DM/PM is a separate disease from a cancer. There are also many forms of myositis too. I am sure you will receive many opinions on the issue of DM/PM "being gone" or getting cured. I have the autoimmune form of DM, and my form does not go away.
A couple things about Acthar - I would not be able to take Acthar since I also have Scleroderma too. If someone does have an overlap with DM/PM, then often Acthar would cause big problems due to the overlap. Many of us do have overlap illnesses. My Scleroderma did not show up until my third year with DM. I am glad that Acthar worked well for you, and the med was made for those who would be able to respond to the treatment. I do think more people should be aware that Acthar is available. I also think insurance should be made to cover those who would benefit.
Insurance gets weird when it come to expensive meds or treatments. Acthar that may have been approved last year, may not get covered this year the same way. I do think it is terrific that Acthar worked for you. I do believe that when The Lord opens a door for a med or treatment that is meant for an individual then you seize that opportunity! You can count your blessings too.
When it comes to a doctor telling a patient that they will be back to 100% then that might be the case for you.
(I am older. I have learned to be a little cynical when it comes to doctor encouragement. I think if I was told that I would be back to 100% then for me, it would mean excellent disease control. I have learned that I sometimes need to interpret the correct meaning from a doctor. I must distinguish between a truth or an encouragement. That is my old lady point of view! HA!)
DM/PM does go into remission for many people, particularly the juvenile form of DM/PM. Be aware that the disease can also come out of remission after several years. For most of us, (particularly over 40 years old) DM/PM is a daily or hourly autoimmune issue.
I do not think you are rocking the boat. This disease is different for each person. Do celebrate any success with DM/PM. Do see the doctor even when in remission too.
and thank you for the response and wishes of wellness :)