Re: Throwing the dice

I have had Rituxan and really liked it. It took about three months before it kicked in. Before that I was VERY discouraged, thinking it hadn't worked. With one treatment, I was able to maintain for a little more than a year before going back to IVIg. Two months after the infusion, I was in more pain than usual - not sure if that's typical of Rituxan or if it was just me.

I had an allergic like reaction to the first infusion. It was quickly resolved by stopping the medication and giving me another dose of IV benadryl. We waited a little bit, started the rituxan at a slower rate and continued on. The rest of that day and the infusion the following week went well. I got the stomach flu between dose one and two and we almost cancelled the second infusion but then someone I work with came down with the same symptoms so we figured it was not related to the Rituxan.

Most people tolerate rituxan fairly well and it has longer lasting effects than most of the medications. I didn't notice an increase in infections but there is a risk for that. I don't know the stats for PM but it seems to be highly effective for treating dermato.

If you're "failing" as many drugs as you've listed, you probably qualify for the RIM study (Rituxan In Myositis). From my experience, studies are a great way to get FANTASTIC medical care with a doc who has a clue what myositis is all about.