I have not tried the rituxan. I know a lot of people on the myositis association website have used rituxan with good results. Personally, I am trying to stay away from IVig and rituxan because they do have scary side effects. I would like to get off all meds but my little flare shows me that might not be possible. If your doctor tells you that it would be right for you, then I would go ahead. I would trust the doctor and get a lot of information from the doc. Keep us posted.

Thank u for ur support and response. I'm very nervous about it as well. Was in ivig for 6 months with no help. And I can't say I loved it like most people. Ended up with aceptic meningitis first time. But I kept on to give it time. I hate hate medicine ... That I'm strapped to it. Well I'm suppose to be. I'm a horrible patient ha. Infusions prolly are my best bet. Only sure way of me for sure doing what I'm suppose to. But I'm 42 and no longer can do anything I once did. Can't work anymore.. Hell Im in the bed of I'm not driving my 2 kids around. So lots of soul searching and afraid I'm going to end up in the bed all the time.. Or wheelchair... I'm considering the rituxan. I'm afraid of it.. But I'm afraid of not too

Rituxan is a chemotherapy med. That's what I first got it for. But I've also had it since, for the myositis problems. Did not have side effects. IVIG worked well for me too. But we all have different reactions. Hope your doctor comes up with the right prescriptions for you.

I also did Rituxan for cancer treatment. During that is when I started having problems with weakness and ultimately Myositis. I tolerated Rixutan well. I did have headaches and fatigue. It obviously didn't help with weakness. It will not be an option for me for treatment of my Myositis.

I have had one round of the rituxan. I had 2 excellent months, I think I almost felt normal - although I don't remember what normal feels like. I am just doing up the insurance crap now with the rituxan people and should have a second round sometime in the next month. All the meds we take can have horrible side effects and one has to weigh for themselves personally whether a treatment like this is worth it for them. Most of my blood levels did come significantly down - which the doctor felt was a positive thing - so for me I will try another round of treatment. Best of luck with yours I hope it works for you! Leanne :)

I have tried rituxan last month. But It didn't respond on me. As I have a refractory case so it is tough but U can try it. Many people In fact got much benifit from it.. : )

I know of two people taking Rixutan that have pm ild and dm ild and are doing great on it. Both have more energy and one is running 3 miles! -:)

Thanks for all ur answers and support. I finally called the rheumy due to not hearing for 7 weeks about when it will start. Only to find out insurance has denied saying it was off label for DM and lupus. Grrrr so sad and mad all rolled up in one! I know insurance will be approved or denied based on the nurse asking for it. I am a shell of the person I was even from last year. I'm 42 and in bed and that's it. Unless I take my kids to wherever. I worked at as nurse. No longer. I played tennis. No longer. Just depressed I guess. She said they would try again. I just feel I need somebody to fight for me! That to much to ask? I did it for years for my patients! Loved every minute of it

I am sorry that you are going through this frustration. Is there a way to talk to the nurse and ask her "how can we work together to get this approved"? This is your time to advocate for yourself and praying things work out for you!
Blessings -:)

hello I am new to this site however, I would like to add that I have DM. I can say that now I feel normal until I get up to walk. My walking is not that good sometimes and I cannot run nor react to certain situations quickly. Can anyone tell me some good meds that has controlled their symptoms of DM?

i just got done with my fourth infusion and have not had any bad side effects so far,i did take about 2 months until i felt any changes,my doctor said it is a drug that needs to build in your system before it statrs working, i have more energy,am able to do more at work i have been sleeping beter,my lumps in my muscles arent as bad,i still have trouble standing for long periods and i cant walk as much as i would like but i belive that is due to permanant mucle damage in my lower back and hips,i say go for it,this is the best i felt in four years and no side effects ,also it has helped lighten the rash but has yet make it go away,thats what my doctor is hoping that it would take the rash away.