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Polymiositis

mary123 Message
31 Jan 2010, 10:49 AM

All i can say is to search it on google there is a site i have joined called myositis support. There are loads of fact sheets on there. Also your brothers consultant is the best person to get all information from as there are loads of different stages and it affects everyone differently. Main treatment is steriods and immune supressants. How old is your brother? Mary
mchase Message
10 Nov 2016, 12:49 AM

Hello I am new to the community. I have had the disease for 3 years now and have been on prednisone and cellcept. My doctor is now recommending Rituxan because the disease is effecting my ability to breath properly. Has anyone ever take Rituxan it is an IV drug. and if so what were the side effects and results.
Rosiemac Message
10 Nov 2016, 04:33 AM

Hi Mike, I have not taken Rituxin but know some who do. A good place to get information in either the Myositis Association website or Myositis Support and Understanding page on Facebook. They have a file section with excellent information. There are some other FB pages. One has a global reach. I personally get IVIG infusions. A good place to be treated is The Myositis Center at Johns Hopkins.