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.

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Swelling

type99
type99
About a week ago, I noticed that my right arm was swollen. It has gotten somewhat worse. I had a fever of 101.5 over the weekend and yesterday. The swelling is from the very end of my hand, wrist facing up, to halfway up to my elbow. My muscle biopsy came back saying "necrotizing pm/ibm. So they don't know what kind of myositis it is. She put me on Azathioprine, said take it for 6 mos., and if there is no response, stop taking it and assume it is IBM.

My question to you is: has anybody else had swelling connected to their myositis?
autumm
autumm
Hi Type 99. I did have swelling but I also had a proper diagnosis. You need to see a doctor with this, it could be a number of things, some of which are serious from infection to blood clots.,I think you also need a good Rheumatologist to make a proper diagnosis. Azathiprine can take up to a year to work and no good doctor would tell you to take it for six months and if its not working it is IBM. This is medicine from the dark ages. Did you have a blood test to check your TMPT levels before she gave you Azathioprine, if you don't have enough of this enzyme you cannot metabolize Azathioprine. Are you having blood every five weeks and how much of the Azathioprine are you on. Please let us know how you are doing. Autumm
Michaelvi
Michaelvi
Pleas
Change a doctor.
Michael
trpt1
trpt1
Hi Type99, I would suggest visiting The Myositis Association website at www.myositis.org Several people at the TMA (Myositis Association website) have experienced a necrotizing form of DM or PM and would be able to give more information.

Did the doctor give you an antibiotic or some type of medication for the necrotizing issues? If you have a streptococcal infection or some type of infection causing the necrotizing issues then a medication would be needed ASAP.

I did have swelling associated with my DM at the beginning of my disease. My swelling went down with the help of Prednisone and my disease modifying anti-rheumatic drug (DMARD). My swelling was not due to a necrotizing issue.

Necrotizing means get treatment fast! The TMA website might be able to point you in the direction of an excellent doctor that has a good background with necrotizing myositis. If you live in the Northeast, John Hopkins Hospital is a good place. Do call the TMA phone number for help. You do not want to waste a moment of time.

Best Wishes.
nanny1611
nanny1611
Hi, type99, and welcome to this forum of nice people. Yes, at the beginning I had swelling which was helped by prednisone. Now that I'm off prednisone, I have swelling again. My wrists and knees are the worst, but my arms are swollen up to my elbows and my legs are swollen down to my ankles. Also, I had a high fever at the beginning of my health problems. But the fever might have been associated with overlapping lupus that went undiagnosed for a few years. If you aren't able to find another doctor, here is a link to brochures at the TMA for physicians who might not be knowledgeable about myositis. Maybe they would help your doctor. Best wishes to you.
http://www.myositis.org/for-health-professionals/professional-resources/422-tma-brochures