Myasthenia + MuSK
 

I am looking for any information about treatments for someone with MG + MuSK. My mom was recently diagnosed. She's had a really tough time and is on a great deal of meds. She's also receiving plasmapheresis almost every 2 weeks for 5 sessions each time. Her doc wants to try Rituxin but mom is resistant. We live in Maine and go to EMMC. Any info would be appreciated.

Sorry to hear about your mom. I am musk positive and it seems I react different to the common meds available. I have been getting rituxin infusions, it was my only chance as I can not take mestanon and the pred doesn't seem to be sufficient. I go to Barnes in St Louis and my neurologist heads the team at Washington University... I have had decent results, and little problems so far, I do have some severe issues especially with heart and diaphragm, but that is not from the rituxin.. began same time as the mg... I dont fear it/rituxin, of course I also dont have any alternative... my condition was quite severe, now I can at least get out of bed and on good days walk a few 100 feet. 3 years ago I could run up the mountain I live on. A year ago I couldn't eat or get to the bathroom. too weak... finally got to point of not being able to breath, or swallow, words were so slurred they were unrecognizable... I specifically asked if they at the hospital where i get the infusions have had any problems. I was told they have never once experienced any life threatening problems from all the rituxin they have administered. Im sure you realize they use it for more than mg.... hope this helps..

my neuro...[Alan Pestronk, MD
Dr. Pestronk is the Director of the Neuromuscular Division and Director of the Neuromuscular Clinical Laboratory at Washington University School of Medicine. St Louis, MO]

Hi, JennyG. Welcome!

MuSK MG is different than AChR MG and can be hard to manage.

http://neuromuscular.wustl.edu/mtime/mgdrug.html#musk

Your Mom's doctor could speak to Dr. Charles Harper at Mayo in Rochester. He has a great deal of experience treating MG patients with Rituxin/Rituximab.

It has really been helping MG patients. Yes, there is a risk of cancer, as there is with any immunosuppressant.

What other meds is she on? Have they tested for any other conditions which might be coexisting (i.e., B12 or D deficiencies, thyroid issues, other AIs, etc.)?

I hope she can find a treatment regimen that works for her! It does help to consult with other MG experts.

Annie