Hey, I was diagnosed with D.M. August 2012. I saw the symptoms as early as May 2012 with the rashes on my knees, but I didn't know what they were. I was Hospitalized in July 2012 and Again in August 2012 with CPKs in the 20,000s. The treatments seemed to work for a little 100mg Prednisone 100mg Immuran, and 3 Treatments of IVIG. Then it seemed as though the disease was under control as of September Oct. Nov. December, CPK as low at 400, as I started weaning off the Prednisone down to 20mgs daily The inflammation has started to occur again, I am back up to 1600 with 30mg Pred. and 150mg Immuran, My doc raised my meds and about 2weeks now the CPK has gone up steady. Now I like my doctor, but I am the second person she has seen in her life with DM. I'm considering finding another doctor, but don't want to appear rude. Haha.
I live in southern NJ and was wondering if anyone else had success with a doctor in this area?
Has anyone else had a similar experience not reacting to the Meds?
I feel like I am always worried and depressed on top of the muscle soreness.
Any information of this would be greatly appreciated. Thanks.
hey lucas, hang in there and dont change drs just yet, im sure youve heard our disease is somewhat rare-well if shes willing to treat you shes willing to learn all she can. my dr isnt very familiar either-but shes aggressive and very concerned. i have polymyositis but its till close to what you have. your also lucky they figured it out as quickly as they did, took 3 rheumatologists about 6 yrs, maybe longer to figure me out. family dr suspected for probably more than 20 yrs theres was something, but just couldnt put his finger on it til some other medical conditions started this ball rolling. i have churg strauss as well, and again rare, its apparently a vasculitis thats effecting my lungs, again as i said rare. so just hang in we're all here to help if you need, and welcome. try lyrica for the soreness, it has helped me, the only issue is it can cause weight gain and swelling, yuck yuck and more yuck, because with the prednisone you have weight gain too. i live close to cincinnati so im sorry cant comment on any drs in your area. but again hang in there with your dr sounds like she knows what shes doing.
hey lucas, hang in there and dont change drs just yet, im sure youve heard our disease is somewhat rare-well if shes willing to treat you shes willing to learn all she can. my dr isnt very familiar either-but shes aggressive and very concerned. i have polymyositis but its till close to what you have. your also lucky they figured it out as quickly as they did, took 3 rheumatologists about 6 yrs, maybe longer to figure me out. family dr suspected for probably more than 20 yrs theres was something, but just couldnt put his finger on it til some other medical conditions started this ball rolling. i have churg strauss as well, and again rare, its apparently a vasculitis thats effecting my lungs, again as i said rare. so just hang in we're all here to help if you need, and welcome. try lyrica for the soreness, it has helped me, the only issue is it can cause weight gain and swelling, yuck yuck and more yuck, because with the prednisone you have weight gain too. i live close to cincinnati so im sorry cant comment on any drs in your area. but again hang in there with your dr sounds like she knows what shes doing.