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Old 11-05-2016, 01:33 PM
4-eyes 4-eyes is offline
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Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
Default Reboot/High dose cytoxan update

Tomorrow marks 6 years since I entered the hospital to do the high dose Cytoxan/revimmune/reboot procedure. It is safe to say that all benefits derived from it are completely gone.

Early on I did great. Around the two year mark some regular flare ups began, despite being on a full regimen of Cellcept, IVIG and prednisone. The symptoms would respond to small increases in steroids for a while, but soon the flares got more frequent, and then more frequent and severe. and finally, the last couple of years, more frequent and severe no matter what I tried.

I've now decided to try something new: Rituxan. My neuro has been doing the protocol for 8 years and her clinic has been participating in a clinical trial of Rituxan. She's gotten it down to a precise protocol that will hopefully avoid the worst of the side effects and give me some quality of life. I will come off the Cellcept and there's a good chance I can get off the prednisone (currently on 17.5 mg every other day). I've completed the pre-labs and all my organs are good to go! I look so good on paper you'd never know how sick I am. LOL I'm just waiting for the word on insurance approval, which should come any day now. Hopefully I'll feel good for the holidays.

I am going to stop updating on the reboot now. It was pretty good, I must say, but not good enough to do again, as I almost died doing it and still have some subtle effects from the high dose chemo. I'm six years older now, and have to factor in age with every decision I make.

If anyone is interested, I am happy to post updates on my Rituxan adventure. It has been "on the table" with my neuro for several years and when I emailed her that I wanted to do it she emailed right back with "I'm so glad you've decided to do Rituxan." That made feel very confident as she is conservative about doing any of these big gun treatments. I have MuSK MG, if anyone is wondering.

Thanks for reading.

Last edited by 4-eyes; 11-05-2016 at 02:42 PM.
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"Thanks for this!" says:
ErinBear (11-05-2016), FREDH (11-06-2016), mrsD (11-05-2016)