Hi,

I am scheduled to undergo high dose cyclophosphamide therapy (aka rebooting or HiCy) for refractory MuSK MG early next month. I've had MG for a number of years and have tried numerous therapies, with poor results with all. I approached my neuro of eight years last month and inquired about the possibility of undergoing this procedure and here I am, 3 weeks later, almost ready to proceed.

A bit about the process: I will be in the hospital for 5 days during which time I will get four ultra high doses of cyclophosphamide (cytoxan), which is a chemotherapy used with cancer patients. This drug will destroy my entire peripheral immune system. I will then go home and stay isolated, and do labs until my white count reaches zero, after which I will begin daily injections of neupogen to force my bone marrow to produce grow me new immune cells which will hopefully not remember, or at least take a while to remember that I'm a person with MG.

This is not a cure. At best I will go into a remission forever. At worst it will not help. Realistically, I would love to get at least a 50% improvement in my symptoms. I will still be using immune suppressants, but hope to kiss the pred and IVIG goodbye. Hopefully my Cellcept will actually WORK after the reboot.

This procedure is used with great success with people with MS, less success with MG, but I am at the point where I need medical science to "toss me a bone" of some kind. I am perfectly healthy aside from the MG, so figure it's time to "go for it." If it doesn't work, at least I will know.

Right now I'm weaning off of all the MG meds. Pred and IVIG are already gone and Cellcept will be done in a couple of more days. A little scary, but I have to be off of them to do the HiCy.

Let me know if you'd like me to update you as I go through this process. I will obviously have a lot of time on my hands, sitting around waiting for my immune system to die, and then grow again. LOL

Anyway, just thought I'd put this out there...

4-eyes

I'd love you to give us updates on how this works. I've never heard of it, but I'll ask my IVIG nurse on Friday because she deals with a lot of MS patients and tries to stay current on all therapies.

Good Luck!

Wow, yes, please update us! I never heard of such a thing. You are very brave. Here's hoping you get your forever-remission!!!

Abby

WOW, yes updates would be great to see how you progress.
Hope it all goes smoothly
take care
Kate

Good Luck - - and please, please let us know how it works out for you.

I have my fingers crossed for remission!!

Sue

Thanks everyone. The waiting can get maddening at times. Wondering if the right choice has been made...

I am the first MG patient to do this at the center where I'm going. It's been done a few dozen times at Johns Hopkins with MG people, with positive results overall.

I guess I'll be posting then! Next (and last) appt is in around 2 weeks when I will get a MUGA scan of my heart, to make sure it's strong enough to tolerate the treatment and to get a baseline of function, since the chemo can affect the heart. If that is OK (and we expect it to be) all systems will be GO.

Catcha later!

4-eyes