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.
Hello everyone. It's been awhile since I've been on the discussion board. Since being diagnosed with DM about 5 years ago, I've mostly just been out living my life with my husband and 2 children. I was lucky enough to be diagnosed fairly early and after being on Prednisone for awhile and Methotrxate, quite a lot of my symptoms resolved. I no longer take Prednisone but I have continued on a low dose of Methotrexate which I do An injection of once a week. I've tried going off the MTX a couple of times and it's never good so my rheumatologist just wants me to stay where I'm at. My labs have been stable for awhile now which is also very good. Here is my issue. Even though my labs look good, I have dealt with chronic fatigue and muscle pain from the beginning. Lately though, the fatigue just seems to have taken over my life. My husband does nearly all the cooking and cleaning. I do work a part time job and have 2 very busy children. I feel like just doing the "basics" in life take everything out of me. And that feeling of "brain fog" is a nearly constant issue as well. I've discussed this with my rheumatologist who pretty much just waves me off since my labs are ok. Does anyone else deal with this almost debilitating fatigue issue? Any advice?
Unfortunately, more research needs to go into the long-term use of immunosuppressant medications. Side effects and infections can occur due to long-term immunosuppressant use and that must be monitored. I am currently taking a short break with rheumy permission and I am off of my Cellcept. I still take daily 5mg Prednisone. I am feeling much better off of the Cellcept for now. I decided to go off the DMARD since I am taking an antibiotic for an infection. It is pointless to lower the immune system with a DMARD while trying to fight an infection. I feel so much better off the DMARD for now.
A big thing to consider is blood sugar and blood pressure. I always run BP and blood sugar if I am very tired. I see the cardiologist once every six months too.
Talk with the rheumy and find out what might help. I find adjustments with diet, checking BP & blood sugar to be most helpful for fatigue. Best Wishes.
Thanks to you and others in this site, I am learning more about our condition than all the MDs I've seen. The fatigue I feel I chalked up to old age. The other symptoms have been helped by Prednisone and MTX. But the biggest help with muscle pain has been sessions of acupuncture. At first I went every week, then tapered off as I began to feel back to my normal physical ability.
Thank you for sharing your experiences for others to learn from.