I did the high dose cytoxan (immune system reboot) in November of 2010. It was fairly quick, harsh and effective. I remain so much better than I've been in a decade. I do, however, continue to use Cellcept and IVIG--they just work now!

I know of one person who did the monthly infusions X6. The side effects were harsh and the treatments were not effective.

I also know of someone who used oral cytoxan over the course of a couple of years. Worked like a charm, not really any bad side effects, but all the good results went away as soon as she stopped it.

Lots for you to think about.

I can't take the big drugs, so I don't have experience to offer.

Like 4-eyes said, responses can vary. Also, why do a chemo treatment WITHOT a reboot? I can't believe they didn't consider that for you.

Is your MG really bad? Do you want to take the cancer risks by taking this drug? Suppressing the immune system is a double edge sword. It can help AI's but it can cause cancer.

I hope you and your docs can come up with what will work for you. Maybe you could simply ask about a reboot or stem cell program.

Annie

I didn't realize until 4eyes mentioned it above that this is the same drug she used for the reboot. I did talk to my local docs about a reboot, but I have insulin dependent diabetes, sarcoid, and asthma which kinda makes the reboot more problematic. My mg is bad enough that I can't come off the predisone and I've been on it off and on for about 7 years now. My bones are starting to thin and my weight keeps climbing. I'm about 40 pounds higher than when I started using prednisone.

I still trying to figure out what do to (if anything) and will keep everyone posted.

Hi Juanita,

Yes, the complicating diagnoses you listed would be a problem. You absolutely do not feel like eating during the reboot (I lost 16 pounds in 3 weeks and was already thin), which would make your sugars go crazy. Also, I had the neutropenic "crisis" or fever, requiring readmission, and that was tough on my body and can see how it would have been more risky with your situation.

The monthly cytoxan infusions, also cause huge nausea issues, hair loss, etc. You'd have to be careful with the insulin for sure. Maybe check into oral cytoxan? Sounds much less risky and icky.

Good luck and hugs.