MMN & Immunosuppressants - any experience?

[rulimping]

Hi there,

I have been on IVIG monthly for 8 months and respond to some extent but no detectable improvement in conduction block. I am moving to 3 weekly IVIG.

My neuro has suggested if this pattern continues that we try a low dose immunosuppressant - ie the type that is used in organ transplant to head off rejection. Cellept (mycophenolate mofetil) was mentioned.

Has anyone had any experience with immunosuppressants for MMN? Interested to hear of response and side effects.

Thanks

 

[Peg B]

I'm sorry I do not know anything on this. Hopefully someone else here can help. Peg

 

[Al]

I tried Cytoxin for 6 months with no ill effects or help that I could document.

AL.

 

[Timmi]

I tried celcept for a couple of months (last year) but had a pain develop in my kidneys. The Neuro was sure that it wasn't the celcept causing his but I wasn't willing to take the risk as I have to keep working. I stopped taking them and have had no further kidney pain.
Since then, I have been getting Rituximab every 6 months (as well as monthly IVIG), and the results so far have been promising.
Because my work takes me away from home for weeks at a time, having IVIG every 3 weeks is not an option for me, so I only have it every 4 weeks. I used to notice significant deterioration during the last week, but since I've been on Rituximab it (the IVIG) seems to have a longer lasting effect and deterioration is less between IVIG ttreatments.

Hope this helps, and good luck with whatever treatment you decide to go with.

Tim