Since it's been about 6 months since my last Cytoxan infusion, I thought I would give a quick update. For those of you not familiar with my story, a quick timeline. Diagnosed with mg in 2000 at age 50; continued working for 10 years with the help of Cellcept, Mestinon, IVIG and prednisone (high dose when needed). Had Thymectomy in 2005 and 28 radiation treatments for Stage II malignant tumor.

Had bad flare in 2010 and ended up in ICU on a ventilator for 7 days at which point, I retired on disability. Struggled on for the next couple of years, but didn't feel the mediations and treatments I was on were taking care of the mg any longer.

I was interested in the reboot 4-eyes undertook, but since I am a Type I diabetic, none of my doctors felt this would be a viable option for me.

I stumbled across the following paper about using Cytoxan as a immune suppresent for mg patients (http://www.ncbi.nlm.nih.gov/pubmed/12115946). After discussing with my neuro and PCP, I started the Cytoxan infusions in March 2012 at which time I stopped the Cellcept, but continued all other medications and treatments. We started at a low dose, but increased it 25% for each infusion until the side affects were so uncomfortable, I made the choice to not go higher on the dosage. Since Cytoxan is a chemo drug, there are side affects of nausea (pretty much controlled with meds) and hair loss. I had monthly infusions for 6 months and then bi-monthly infusions for another 6 months. After my last infusion, I started on Imuran, 150 mg/day.

I am feeling better than I have in about 8 years (before my Thymectomy). Granted, I an no longer working so that definitely helps, but my energy levels are much higher and I can actually do things I haven't been able to do for years. I am only on 10 mg predisone every other day (mainly because my body goes into adrenal fatigue if I go lower) and I have been able to stretch my IVIG to every 3 weeks instead of every 2 weeks (I've been on every 2 week for about 3 years). I might even be able to go longer, but I'm not ready to push it that far yet.

Would I do this again? In a heartbeat. My neuro and I have discussed that this might be an option again if at some time in the future, I start to slide again as badly as I did the last time. The oncologist who administered the Cytoxan also agrees that it may be a viable option in the future.

I'll be glad to answer any questions you may have. Have a great day!

Thanks for updating us. I'm so glad to hear that you've had good results and now stabilized on maintenance medication. I hope things continue to go well for many more years. It's such a delicate balance.

Cate

Glad to hear you've had lasting results, Juanita! I think if/when the MG symptoms come back for me in force, I would like to try your method. As I age, the thought of enduring another reboot seems less appealing.

I enjoy every single day of improvement, as I'm sure you do. I never knew how sick I really was until I got better.

Take care.