Hi there.
I am tempering down the prednisone, but I already notice my MG waking up... Not that it was sleeping, but I feel my body gotting weaker and weaker. I am now at that point where you HAVE to lay down at least 3 times a day, after showering / dressing, after "doing something" (like studying for 30 min) and in the middle of the day. And stairs seem to get steeper (have to climb them hands and feet), simple cookie seems to be made out of rubber, and my face is in constant "what is wrong with you?" modus.

You know, that phase where scratching your head feels like your lifting heavy weigths 50 times in a row,
And this is only 20 to 17,5 mg prednisone a day, my doc even advised going down to 15 mg. because no way that that would give me that much more mg symptoms....

But I was told by my doc about something called rituximab. But I wondered, isn't it more obvious to try ivig for me first? MG is not an indication for rituximab, ivig is.... And well, I just think I deserve good, working treatment now.
Anyone knows what comes first? Rituximab or ivig?
Or anyone has any experience with rituximab? It seems like such a heavy treatment, much more damaging than ivig.

Oh, and another one (yeah sorry, but i have loads of questions but nowhere to turn to but here), i read you need an one time treatment of 100 mg prednison with that rituximab. Isn't that kind of a contraindication for someone who ibviously cant even have 20 mg? Or is it different because its not in pills?
Thanks all

I was offered Rituxan a few years ago. At that time, you had to have at least 3 other documented treatment failures of other things before you could move on to Rituxan. I had that, but then there was the "little" issue of PML.

PML is caused by the reactivation of the JC virus, that lies dormant and harmless in a large percentage of the population. If it gets reactivated, it is devastating and most usually deadly. That was enough to make me refuse the treatment, especially when the neuro said she doesn't know that she would do it if she was the patient!

You can now have a test for the JC virus prior to treatment. If you find that you test positive, then you would have to really think if you wanted to take the very small, yet potentially deadly risk. OTOH, Cellcept and even pred also carry the risk of JC virus reactivation, and I take both of them (which made me more reluctant to do the rituxan at the time).

The 100 mg of steroids given with the treatment is typical protocol when receiving a chemotherapy agent, which rituxan is. It helps with the side effects and helps to enhance the treatment. Once again, that's a risk you'd have to take, but it is not necessarily "bad treatment." I have a friend who did Rituxan, but got the steroids deleted from the protocol. Interestingly, she got ZERO benefit from the Rituxan.

All in all, it is more typical to do IVIG, plasmapharesis, oral steroids or an immune suppressing drug before going on the rituxan or cytoxan or high dose cytoxan (which I eventually did). Sounds like you need to do some research and either email or have a long talk with your neuro, to make sure you're on the same page.

Good luck.

Thanks so much!
Yeah I already tried: steroids and 3 immune supressors (methotrexate, azathioptin and cellcept). Still on cellcept and prednison (and more). Thanks for that JC information! Sounds way too scary. Yes I would try if there wasnt another option, but still havent tried ivig so yeah.
I never heard of cytoxan by the way.