Praying God will watch over you and know that are a lot of people who care!
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I know this is all a lot to take in especially when a disease is hurting your loved one. Hang in there mom!
Debdeb, I’ve had dermatomyositis with ILD for over 13 years. There is no cure but it can be managed. The biopsy does hurt I won’t lie, but it will give the doctor more information. I see a rhumatologist and a pulmonary doc. They are very helpful. There is a Myositis Association on the net that gives a lot of info for us. Also you can request books from them that you can give to your doctor. They also have a convention once a year that gives you a lot of info. They have people from all over, doctors from all over and care giver classes for your caregiver. Do not give up, one day at a time, enjoy life and pray constantly. I hope this helps.
Hi Colleen, none of my doctors have said anything at this time. I was checking out my options for who knows when I might need a transplant. Dermatomyositis is a disease that’s somedays I believe has a mind of its own.
I have dermatomyositis with ILD for over 13 years. Since dermatomyositis is an autoimmune disease could a patient like me be able to have a transplant or would my body attack the new lung also?
Apr 15, 2016 · Is anyone here on, or been on, mycophenolate for PN? in Neuropathy
John I have been on cellcept for over 5 years. I have dermatomyositis with ILD for over 13 years! This drug has kept my disease under control. I was taking 2000 mg per day but I was in so much pain doctor reduced it to 1500 mg see if that helps. My insurance pays for it.