Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello everyone,
I was wondering if anyone is currently on Rituxan and how well is it working for you?
My wife was diagnosed with MG 5 years ago. She has been on IVIG treatments for 2 and a half years and they do not seem to be working. She has recently had a major setback over the holiday weekend and was in the hospital until Monday. She is back at home but is very weak and is having trouble walking.
I have read many articles on Rituxan and her doctor mentioned it a year ago, but we deceided to see if the IVIG treatments would work. It looks like the IVIG treatments work to keep her at her baseline but they are not helping her get any better.
I appreciate you all reading this and helping any way you can.
Thank you.
May I suggest you look at the International consensus guidelance for management of MG which were posted on-line late 2016. It may help with some of the decisions.
Rituxan has worked for folks with "refractory" MG, that means if they don't respond to less problematic meds (Imuran, Cellcept and Prednisone).
There are several research studies that say after rituxan, patients could take less prednisone or other standard meds after the Rituxan treatment. It is also one that has to be taken at regular intervals -- although maybe only
(you can search the web on terms research myasthenia gravis rituxan to find them.
One:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3187675/
If your wife is not able to tolerate one of the standard treatments, or they have been tried and don't work, then your neuro may decide to try rituxan, but so far it is reserved for folks where the other therapies don't work.
A relatively clear discussion of MG treatment can be found at Mayo Clinic's website http://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/treatment/txc-20200983
Good Luck.
I have previously been on Rituxan after trying pred, Imuran, Mestinon and IVIG which did not significantly improve an MG crisis. It took a few weeks for the full effects of the Rituxan to take place but within a few months I was asymptomatic, this period lasted approximately 12 months until symptoms started to reappear. After another round of the Rituxan I was in remission for two years and now any MG flare ups I have can be treated short term with Mestinon and pred until the cause of the flare up is resolved. ( eg, viruses, stress, heat ect).
I cannot speak for all MG sufferers which have been treated with Rituxan, but it has been effective at keeping my MG at bay to the point where I can forget I have it.
Although Rituxan does have its fair share of side effects as with any MG drugs which include immunosuppressive effects which may cause new or reactivated infections.
Hope this helps some.
Good luck wth your wife's treatment!