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 havent posted in awhile. I had another surgery recently. This time a hernia repair and have been dealing with ongoing GI issues. Now my GI doc wants me to have a colonoscopy to screen me for Crohn's Disease and Ulcerative Colitis. Ugh...It never ends.
Back in March, my rheumy decided it was ok for me to go off my Methotrexate injections because my CK levels had been very low for 3 months at that point. Plus I was having some issues on the MTX so she told me if I wanted to try to go off it that was fine with her but we would watch my CK's closely and if they started to show a trend upward, it was back on the meds for me.
About a week ago I told my husband I was noticing more pain and weakness in my legs. I had my CK's checked this week and they were double what they were 6 weeks ago. Still in the "normal" range but double what they were. My rheumy wants to see how they are in another six weeks. If they are increasing still, then its back on MTX and maybe a low dose of Prednisone for me.
I am thinking about trying Imuran this time around if need be. I was taking the injectable MTX. That is extremely hard to find now where I live and with my GI issues, the pills just dont appeal to me at all. I dont know much about Imuran vs. Methotrexate. Has anyone been tried both? Which did you prefer and why? Side effects of Imuran?
Thanks everyone! :) -Angie
Back in March, my rheumy decided it was ok for me to go off my Methotrexate injections because my CK levels had been very low for 3 months at that point. Plus I was having some issues on the MTX so she told me if I wanted to try to go off it that was fine with her but we would watch my CK's closely and if they started to show a trend upward, it was back on the meds for me.
About a week ago I told my husband I was noticing more pain and weakness in my legs. I had my CK's checked this week and they were double what they were 6 weeks ago. Still in the "normal" range but double what they were. My rheumy wants to see how they are in another six weeks. If they are increasing still, then its back on MTX and maybe a low dose of Prednisone for me.
I am thinking about trying Imuran this time around if need be. I was taking the injectable MTX. That is extremely hard to find now where I live and with my GI issues, the pills just dont appeal to me at all. I dont know much about Imuran vs. Methotrexate. Has anyone been tried both? Which did you prefer and why? Side effects of Imuran?
Thanks everyone! :) -Angie
It has has helped my polymyositis get better. I cant say anything about the other treatment, I havent experienced it. Keep us posted on the progress.
Sorry you aren't feeling good. i don't have any experience with Imuran but I think I would also want to give it a try since the Methotrexate didn't work out for you. I went from the MTX injections to the pills and they do cause some gastro problems but just for one day, and i wonder if they are working as well as the injections did. We are also having a hard time getting the injectable in Pittsburgh, so I am on the pills for now. I hope to do that for another year then get off of them completely and live happily ever after.
Hugs
Maruska
I have been on a gluten-free diet almost 4 years. Gluten definitely raises my inflammation levels within 30-60 mins. of ingestion. And the bad effects can last up to a week. Also, I use a product called Inflameric Zyme, which contains both tumeric and boswellia to help control my inflammation. Recently my doctor told me to continue taking it daily to hopefully keep me off prednisone. I will say a prayer that the GF diet and tumeric help you. Let us know.