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!
I've been reading the posts sporadically for a few months but just recently joined. Here's an overview of my journey:
In February I started getting Gottron's papules on my hands. I went to my PCP in April because they hadn't improved and I had no idea what they were. They could be very painful at times. She prescribed a steroid cream which did not help.
She referred me to a dermatologist who I saw in June. The dermatologist did a biopsy of one of the papules and ordered bloodwork. My bloodwork came back normal but the biopsy was consistent with dermatomyositis.
I went back in for a follow-up in August and by then I had developed a horrible rash on my chest, face, and arms. I was put on prednisone starting at 60 mg and tapering down until I finished in mid-September. The prednisone helped the rash but the side effects were awful and it didn't help the Gottron's papules one bit.
At the end of September I saw a neurologist, (Rheumatology said they couldn't help me). He ordered an EMG to rule out that the muscles weren't involved because I hadn't had any muscle issues. He was hoping it was amyopathic dermatomyositis.
I had the EMG in October and the results showed muscle damage so now they want to do a muscle biopsy. Since then, my rash has gotten bad again and my arms and legs are noticably sore.
I'm currently waiting for the neurologist to call and set up an appt for the muscle biopsy. I am hoping it's soon as my rash has been unbearably itchy at times and I would like to get on something. The steroid cream hasn't helped the rash but Benadryl cream does.
This has been rather frustrating and scary. I read the post about SSD and I am in complete denial that this will get that bad. :-(
I've been reading the posts sporadically for a few months but just recently joined. Here's an overview of my journey:
In February I started getting Gottron's papules on my hands. I went to my PCP in April because they hadn't improved and I had no idea what they were. They could be very painful at times. She prescribed a steroid cream which did not help.
She referred me to a dermatologist who I saw in June. The dermatologist did a biopsy of one of the papules and ordered bloodwork. My bloodwork came back normal but the biopsy was consistent with dermatomyositis.
I went back in for a follow-up in August and by then I had developed a horrible rash on my chest, face, and arms. I was put on prednisone starting at 60 mg and tapering down until I finished in mid-September. The prednisone helped the rash but the side effects were awful and it didn't help the Gottron's papules one bit.
At the end of September I saw a neurologist, (Rheumatology said they couldn't help me). He ordered an EMG to rule out that the muscles weren't involved because I hadn't had any muscle issues. He was hoping it was amyopathic dermatomyositis.
I had the EMG in October and the results showed muscle damage so now they want to do a muscle biopsy. Since then, my rash has gotten bad again and my arms and legs are noticably sore.
I'm currently waiting for the neurologist to call and set up an appt for the muscle biopsy. I am hoping it's soon as my rash has been unbearably itchy at times and I would like to get on something. The steroid cream hasn't helped the rash but Benadryl cream does.
This has been rather frustrating and scary. I read the post about SSD and I am in complete denial that this will get that bad. :-(
Try not to be scared at the beginning of this disease. Things will get better over time, but it does take some time before improvements are seen. It took me three months before I began to get control on my DM. I also had to take high doses of Prednisone and Methotrexate at the beginning of my DM.
DM/PM and ADM is different for each person too. I hope you get to the bottom of all that is happening and get a good treatment soon. Best Wishes.
I did not like being on Prednisone but the Plaquenil isn't doing much any more. If the rheumatologist I see on Friday recommends it I will take it again. I didn't have muscle symptoms at first but I have been so weak and sore lately. I'm at a weird age (33) to get diagnosed with dermatomyositis. I have 4 children ages 13, 11, 10 and 2 and I am having a really hard time keeping up with them.
Sara