Well, I had my final Cytoxan infusion about 3 weeks ago and saw my neuro about 2 weeks ago. I am stronger than I have been in several years and my neuro is quite pleased. My baseline for counting (taking a deep breath and counting as out loud as far as I can in one breath) was 48 and I made it all the way to 50. A year ago (before I started the Cytoxan), I was at 14. All my muscles are stronger and I feel pretty good.

The biggest problem with the Cytoxan was that the longer I was on it, the more it affected me with side affects after the infusion. The nausea was worse and the other GI side affects got worse (constipation, etc) and lasted longer. Also, I'm a Type 1 diabetic and it started causing my blood sugar to skyrocket. For about 7-10 days after the infusion, I really struggled to get my blood sugar below 400. I'm on a pump and even with increasing my base rate 70%, I still had problems. My oncologist advised that I stop the Cytoxan because he thought it was making me slightly toxic and that would only get worse.

However, I don't regret the treatment at all since it did such a good job of making me stronger. FYI, I did a monthly infusion for 6 months and then bi-monthly for 8 months.

I am now starting Imuran and we'll see how that goes. FYI, I was on Cellcept for 12 years (3,000 units/day) before I started the Cytoxan. Apparently, it had stopped working for me because I had a hard time before I started the Cytoxan.

Overall, good experience.

Thanks for the update! When you feel strong it's quite shocking to realize just how weak you had been, isn't it?

I hope your "boost" lasts you a very long time. Please continue to update us in the coming months.

This is the first time I heard this drug used with MG. I am glad it is working for you.

thanks,
kathie

Hi kathie- FYI, I started the cytoxan because of the following study:

http://www.ncbi.nlm.nih.gov/pubmed/12115946

(Just in case you're interested)

Have a great day!