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Dermatomyositis and Struggling
I am almost at the 2 yr mark of diagnosis. I’m tapering off prednisone. Down to 2 mg.
Legs feel very heavy and mentally not doing so well. Is there some type of help with the mental struggle with this disease? Feels as if my body is with withdrawing after 2 yrs and my mind is all over the place right now. Anyone tapered successfully?
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I'm at 9 years with the disease I take 5 mg of prednisone will be on it forever I guess but it keeps me going good luck n
9 years…I’m almost 2 years. I’m hoping I can get to a day that seems ok. I think I have some neuropathy in my feet. Mayo appt coming up. Also, new drug being released in late Sept…have you read about that?
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2 ReactionsNo I haven't but I will be asking about it yes I have issues in the winter with my toes turning bluish purple I have learned to wear socks even though I don't want to haha
@livinglife1 I have been on imuron for 9 years it is working pretty well but I'll always be on the 5 mg of prednisone I've tried to go off of it I cannot do it I get a lot of nausea good luck at your appointment
Has anyone tried immunoglobulin therapy for dermatomyositis?
@rutgersmom123 are you referring to IVIg? If so, I did one round in the hospital and saw a small improvement within a week. I’m in a DM group where many are being successfully treated with IVIg. If you have had a DVT or PE, you would have to discuss it carefully with your doctors. I had 2 DVT’s prior and IVIg comes with a thrombosis warning. I signed the waiver so I knew the risk. I later developed a CVST, so I had to discontinue IVIg. I am in the process of trying to get SCIg approved (lower risk) so I haven’t given up. Good luck 🙂
Thank you for the information. I have not had a DVT but I am on Eliquis for Afib. My rheumatologist reccomended IVIg but I am not sure. So far The DM has given me some mild shin issues and left me feeling tired. I also have RA, and am on methotrexate injectable. The method seems to control the itching. Don't know what to do, but thanks so much for the info.
@rutgersmom123 can you share more about the shin issues? Kind of like a shin split or tendinitis? I was feeling a lot of shin/ankle pain on one side and hip pain on the other. No diagnosis as of yet but have done some labs. Thank you.
@rutgersmom123
I've been having IVIG's for a few years. After being diagnosed with dermatomyositis, the rheumatologist prescribed it. Fortunately, it kept the disorder from progressing.
After a year, it was suspended. Then, 3 years ago, I developed the horrible itching of the scalp and neck (mostly in the evening). She prescribed returning to the monthly infusion. Itching is much less severe.
At my check-up a few months ago, she spoke of SCIg infusions, but wanted to wait til there was more use of it