Snoel,

Thanks for the info. So sorry you had no response. The word on the street is that there is better success with Musk MG people, and I hope it's true. I've recently been denied Gamunex after 15 years of use and PLEX is not a good option as I am 100 miles from my treatment center and have LOUSY venous access. I had a port for IVIG but it quit last year and I was doing the Gamunex subq.

I will keep you posted.

Hi 4-eyes - I did the Rituxan last year and so far, it seems to be doing well. I'm trying to remember the protocol, but I do know they have been checking my levels every 3 months to see if I need additional Rituxan. So far, my levels are so low, they are not recommending any additional Rituxan and it has been almost a year and a half since my original doses. My mg has been under pretty good control. The only time I have had any issues was when I started having bad problems with my back (lifelong problems) and ended up in bed for about 2 weeks. My mg did not do well during the time my back was so problematic, but now that I am getting steroid injections in my back, the mg seems to be doing ok. I don't know why the mg would react to the back pain, but I see my neuro next week and I'm going to ask at that time.

Good luck with the Rituxan. I am very pleased with the results. Of course, I'm still on IVIG and Imuran; but doing much better with the mg overall.

Juanita,

Do you have ACHR or MuSK antibodies? Sorry I don't recall.

It sounds like you've had a pretty good response. My neuro does the Rituxan in one dose instead of 4 weekly doses like many have done. The dose is based on body area (height and weight). I like that as it's custom-dosed for me.

Thanks again for chiming in on this!

I had mine in 2 doses based on body area also.

I think I have ACHR - The normal test was positive for me the first time around.

Good luck!

4-eyes, I really appreciate your updates, as I'm sure everyone else does! I'm sorry things haven't gone as you would have liked.

I hope the new regimen does the trick!!!


Annie