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.

317 Members

2,891 Posts

0 Online

jfreeze0 03/10/2011

Hello. I just saw my rheumatologist and she is going to prescribe Cellcept. From these boards I had actually heard of the drug before! Apparently she needs government approval in order to prescribe this drug as it is so expensive. So, any fellow Canadians taking this drug? How expensive are we talking about? Also, what kind of side effects has anyone experienced? My body seems to hate drugs and this is why we are resorting to this drug as Methotrexate and Imuran were such miserable failures. Any info much appreciated! Thanks!

deleted_user 03/11/2011

I've been on Cellcept since July, started on 2,000 mg and now up to 3,000 mg. I had to switch as I was allergic to Imuran. My rheumy said there are less side effects with Cellcept, but I had a headache, when I upped my meds a rash, hot flashes, but I get through it - wasn't bad. My doctor did say that he may add prograf (as it's good for PM with ISL) and that is what John Hopkins prescribes sometimes - I will see when I go there this coming week. I think, FOR ME,. the Imuran worked better than the Cellcept as I'm upping the dose and the burning/ache/weakness act up in a month - so they may replace cellcept with Prograf - but prograf is no fun. We shall see and I will let you know. We are all different, but that's my experience so far.

deleted_user 03/11/2011

By the way, since I work in health care, Cellcept is very expensive, we have had conversations with pharmacies regarding cost for employers. Thank God I have insurance and I pay a $10 copay!

jfreeze0 03/12/2011

Thanks for the information. My dose, when I fully dose up, will also be 3000. So so expensive... Why can't the cheaper pills work for me? I was allergic to methotrexate and Imuran. Fingers crossed I'm not allergic to the Cellcept after filling that very expensive prescription!!! When I came home my husband asked why I didn't just fill it for a week. Oh well, hindsight is 20/20. I never even made it to have any positive effects from either methotrexate or Imuran as the allergic reactions kicked in long before then.

When you wrote ISL did you actually mean ILD (interstitial lung disease)? I don't like the sounds of that prograf - whenever it says, "Very strong medication" I get the heebie-jeebies.

deleted_user 03/12/2011

jfreez - yes ISL (intesitional lung disease). I know I read that too that's it a strong medication. We'll see what they say next week and I will let you know - Big Hugs :-)

jfreeze0 03/14/2011

So far so good... (hope I haven't jinxed myself). After paying all this money for the drug if I have side effects I might not care. :o)

Join the Conversation