Refractory MG?
 

Hey everyone,
I'm new here. I have MuSK+ refractory MG...meaning it does not want to be treated and is very stubborn! I'm on CellCept right now, have been for 10 years. Mestinon does nothing for me. I just tried Cyclosporine and felt like I was being poisoned. Stopped that yesterday and feel MUCH better. I've tried IVIG, didn't work for me. I was getting plasmapheresis every 3 weeks for the last 10 years. I don't have a port or fistula, so they used my veins. It's like it all of the sudden stopped working.

My neurologist suggested Prograf, but I'm allergic to azithromycin so I can't take it. My next step is Rituximab (Rituxan). Any suggestions of other treatments?
Thanks!
Kerri

I'm also MuSK positive X12 years and was refractory on CC, pred and IVIG. I had high dose cyclophosphamide (cytoxan) therapy in Nov. I am now symptom free. It is also referred to as an "immune system reboot."

Please examine the risk factors for PML with Rituxan. It is especially important since you've taken Cellcept.

My neuro also offers pulse doses of Cyclophasphamide if you don't want to go for the immune system reboot. That might also be an option for you.

Good luck.

Kerri,

Welcome to the forum!!
I'm sure you'll find lots of helpful people on the message board...

Rachel

Hi Kerri - glad you found us! Great folks, lots of info and support.

Hey!
Thank you for the info. Do you know if Cytoxan has any relation to cyclosporine? I couldn't handle that...I swear I had every side effect.
I've heard of PML...I didn't realize taking CellCept added to the risk.
I will ask my neuro and check it out. Thanks so much for the info!
Kerri

No, they are completely different.

Yes, Cellcept itself can cause PML. It has a blackbox warning. In my case, I decided I didn't want to compound the risk.