Hello everyone - went to Vanderbilt yesterday to see a neuro who specializes in mg at the MDA clinic there and had an interesting visit. Just a little background first - I've had mg for 12 years and been basically the same treatment plan as far as immunosuppression the entire time (Cellcept-3000 mg daily). Have had a thymectomy and do IVIG bi-weekly along with mestinon and Cellcept with predisone added in for those times when nothing else works (currently on 35 mg daily). My local neuro and I thought it might be time to get another opinion for a treatment plan, so off to Vanderbilt my daughter and I went.

Their suggestion was to try IV Cytoxan (cyclophosphamide) in place of the Cellcept. It is actually a chemo drug and in high doses carries a lot of side affects. However, their experience in using it for mg in smaller doses administered via IV monthly, is that it is effective without a lot of the bad side affects. It doesn't work for everyone, but in several cases similar to mine, has worked when Cellcept didn't. The goal is also to eliminate the presdisone and Cellcept completely.

Since I have been on Cellcept so long, I can't really tell if it is working or not. I guess the only way I could tell would be to stop it and see if my mg gets worse.

Has anyone out there tried Cytoxan? If so, what was your experience? I'm in the learning stages right now and will be talking to my local neuro and internist once I understand what the heck I'm talking about.

Thanks for have a great weekend.

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.