Polymyositis Community Group
Looking for people to discuss blood work and similar issues related to polymyostis. I'm on a quest to see what meds work. How diet has an effect on this disease and possibly figuring out the DNA, as well as environmental issues. Open to all.
Hi ,
Just thought i'd ask if any of you guys have tried Rituximab infusions?
I was diagnosed in 96 with PM and over the last 15 years ive had 3 three bad relapses , spent 4 years on Methotrex , 5 years on first regime of AZA , the rest on Preds alone and now more recently since this last relapse , two sets of RITUXIMAB infusions...that was in January...must admit I do feel better in my muscle strength and general day to day getting about...it takes a good 3-6 months before it starts any work on your B-cells but the early signs are good..myoglobin returned to normal almost immediatly , CPK's dropping and liver functions easing..
First time ever I've felt this way...
Ask your GP about it if you haven't already..
best
Just thought i'd ask if any of you guys have tried Rituximab infusions?
I was diagnosed in 96 with PM and over the last 15 years ive had 3 three bad relapses , spent 4 years on Methotrex , 5 years on first regime of AZA , the rest on Preds alone and now more recently since this last relapse , two sets of RITUXIMAB infusions...that was in January...must admit I do feel better in my muscle strength and general day to day getting about...it takes a good 3-6 months before it starts any work on your B-cells but the early signs are good..myoglobin returned to normal almost immediatly , CPK's dropping and liver functions easing..
First time ever I've felt this way...
Ask your GP about it if you haven't already..
best
I had a second lot myself back in early june and yea , I'm feeling okay although your right CK levels not really dropping below 1800 , but as you say thats probably due to simply doing more..
I'm due to see my consultant early Sept so i'll update you..
best