Has anyone here used Rituxan for their mg? If so, what has been your experience? I'm seriously thinking of talking to my neuro about doing a round of Rituxan shortly. All the research I have done indicates it is very helpful for mg patients and I haven't seen any major side affects.

For those not familiar with my history, I was diagnosed in 2000, had a thymectomy in 2005 and have been on almost all treatments for mg; mestinon, Cellcept, IVIG, Cytoxan, and Imuran. Recently, my arms, hands and fingers are being greatly affected by the mg, which is a real bummer because I love to quilt and cook and I need my hands and arms for both. I have dropped many things (at home and in stores) and I need to be extremely careful when carrying hot pots of food from the stove to the sink.

Just wanted to know anyone else's experience with Rituxan and if you considered it but decided not to use it, I would like to know your reasoning.

Thanks for all your help and stay warm and dry!

I considered it a few years ago, but my neuro discouraged me because it seems to not work as well for those with MuSK MG and because of the risk of activation of the JC virus. Now, however, there is a test for JC virus that you can do prior to making a decision.

Sorry the Cytoxan goodness has petered out on you. I'm in much the same boat. Have you considered another round of that, since it did a good job?

Good luck with your decision and with whatever you decide to try!

Hi 4-eyes. I have considered another round of Cytoxan but thought I would check into Rituxan first. The Cytoxan did work great for me, but it did nothing for my double vision whereas I saw some good results on dv with Rituxan. Probably by the time this is all said and done, I will have done both at some time! I'll talk to my neuro about the JC virus (don't think I have that problem, but better to be safe than sorry) Also, I know it's kinda weird to not know after 15 years, but I'm not sure if I have MuSK mg - or what kind I have. I don't have a copy of the original blood test done 15 years ago which I diagnosed me. I'll have to ask my neuro again.

Thanks for the info - sorry you Cytoxan is wearing off too! Ain't mg a *****? (sorry for the cussing, but is one of the rare things that does make me want to cuss).

i had 2 infusions just 3 weeks ago by the 4th day after 1st infusion I woke up a brand new person. My MG was really affecting my day to day life. Trouble walking up my stairs, swallowing, trying to grocery shop. I had 2 IViG treatments 5 months apart with no results, currently take Azathioprine 150mg. The Rituxan has a led me to take 2 mile walks daily and yesterday I walked down 4 flights of stairs and jogged back up. I could barely walk up my stairs at home for over a year. Yes I'm excited about this progress. When diagnosed all my labs were normal. I was diagnosed with Tensilon and exam June of last year. I am now wanting to do a Thymectomy to hopefully keep this good thing going. I hope you get some relief from this crazy disease.

I saw my neuro earlier this week and he agrees I am definitely weaker in my hands, arms, neck and breathing since I saw him in December. I hadn't realized my breathing was being affected, guess I was just worried about the new symptoms! I did the blood test for the JC Virus and the results aren't back yet. My neuro emailed the doc at the Mayo Clinic in Rochester (mentioned in another post) and received a reply in about 2 hours. He agreed with my docs plan as follows: JC virus test, 5 days of IVIG to build up my system and then the Rituxan (1000 mg/treatment - for 4 weeks - then some version of monthly for a couple of months - can't remember if there is a skipped month in there!)

I keep you posted of what is going on - apparently I am the first in this area to use Rituxan for mg (if it all works out), so I'm going to be the test subject.

Good luck! I hope it brings you significant improvement!!

In April of 2014, I went into crisis, ICU for about ten days. I had just been diagnosed with mg. the mestenon I believe triggered the crisis. I had eleven plasma pharisees while at hospital, sent home on prednazone.....

by October 2014 I again was in crisis,checked in to Barnes in st louis. My new neuro, gave me 5 plasma pharisees, and

my 1st infusion of retuximab/retuxin....
two weeks later a second... 1st week of Jan 2015 another, and am getting a final in March for now.

So far many results have been good. After years I no longer have dbl vision. I have some strength each morning now. Not choking, not vomiting, gird is gone, slurred speech is gone..i still have problems breathing, wheezing, my diaphragm is not working correctly and I am having congestive heart failure which developed over the last ten months.... I am in the process of scheduling for a defib/pace maker. but I keep asking about more pharisees first as these conditions disappeared after the eleven in the spring, but only for a few weeks....