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.
My husband was diagnosed in July of 2013. He is 44 years old. At frist the doctors could not figure out why he was so sore and why he was losing so much weight. Then the rash came. And he is dark complected so it was hard to see at first. Then it got purple. I suggested they do an autoimmune pannel to check for maybe Fibromyalga! After the results came back, he was sent to the ER with his CK almost at 7000 and adolase at 67%. We did a thigh muscle biopsy to confirm he has DM. Over the last months, he has been resistant to most medications even Prednisone at 60mg and Imuran at 150mg(will be 200mg soon) but once he started the IVIG, the numbers were going down and he was feeling better. Now, his CK level has bottomed out and his adolase keeps rising, now at 20%, when it was down to 8% and he is feeling bad again. ANd this was right after a 4 day blast of IVIG. He did another MRI on Friday to see if the diease is active again, which by the way he feels, it is. SHould we try a different drug "cocktail" to get him to feel better? What else can we do?? He is unable to work because he has a phyiscal job outside and he is not a homebody. We were so close to getting him in remission and starting physical therapy!! Sucks! Thank you for letting me vent and God Bless all who have to fight their own body everyday, I pray everyday that you find comfort!!
Was your husband on statins before getting DM? If I recall correctly, statin-induced myositis is more drug resistant and can cause necrotyzing myositis. Might want to ask your doctor about this if your husband had been on statins.
Lastly, I would suggest reading some of the old posts on this forum, as they contain lots of good info. You can read what has helped others, as well as what medications have worked for them. And don't forget to visit The Myositis Association website and FB pages for additional information. Best wishes to you and your husband.
http://www.myositis.org/
https://www.facebook.com/Myositis
http://sportsillustrated.cnn.com/vault/article/magazine/MAG1194725/1/index.htm
My advice, is to embrace the disease and try to have a life with it. It is unpredictable...flares when it wants to, but that might allow your hubby to rest more than he normally would if he didn't have DM. I have PM, so it isn't as debilitating, but it causes more hip problems.
Also, your hubby probably might need to see somebody he can vent to about his losses. PM/DM is a heavy sentence, and life does change abruptly. I'm still trying to accept what I cannot change...I can't climb steps, or ladders, or even a sidewalk curb.
We all deal with these diseases in our own way. It takes time, and there is help available if needed. In my case, Life is no longer a rat race...I am the slow and steady turtle. I'm in my 50's, so I don't have anymore mountains to climb.
I wish you and your hubby a great future despite DM...
Purr,
=^.,.^=
I'm also new to this group and my husband has a lot in common with yours, although he was diagnosed with polymyositis, not DM, in November, 2013. He, too, is a big, muscular guy and is finding this really hard to deal with. It's really frustrating him not to be able to do the things he took so much for granted before and we're still trying to find that "magical" drug solution/combination so he'll start feeling better. He was on Prednisone but can't continue them because of his diabetes and high blood sugars so they started him on Imuran (Azathiopine). He's been on that for three weeks now, but there's not much improvement yet. Hopefully things will start to looks up soon.
We're learning to take this day by day and really trying to accept his limitations but it's a struggle. This site is fantastic.....the things I've learned on here with regards to symptoms and treatment is beyond words. Keep reading back over the old posts here as well.....there's lots to learn but mostly you'll realize you're not alone with this disease.
Keep strong and keep us posted on your husband's journey!
How long was he on Prednisone at 60 mg? Some doctors seem to do a fast taper and that doesn't usually do the trick.
Fingers crossed they can figure it out and help your hubby.
Thank you sooo much! I just want him to feel better and to have hope again... he is so differernt now and he is full of anger... just trying to stay positive for our familys sake!