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.

Hi 4-eyes

I'm AChR and have tried RITUXAN with no success...my Neuro and I were very optimistic about the whole thing and it took me a lot of convincing to go for it and it did nothing for as far as reducing PlasmaPherisis or any other meds .

I was on weekly Plex's 82 in total until 2 weeks ago and now back to IvIg on a 3 week schedule, it's only been 2 weeks today and seem to be holding up, I'm getting a bit of flare ups I just up my Mestinon dosage and seems fine...

I had to get off PlasmaPherisis because of possible side effects, I'm having terrible MUSCLE PAIN especially in my upper legs and arms, I'm seeing a Rumhatoligist in December, my Neuro also wants me to cut back on my Imuran for 2 weeks from 200 to 100mg/day and see how I feel, he thinks it could be a side effect from the IMURAN...

Good luck and keep us updated.

Snoel,

Thanks for the info. So sorry you had no response. The word on the street is that there is better success with Musk MG people, and I hope it's true. I've recently been denied Gamunex after 15 years of use and PLEX is not a good option as I am 100 miles from my treatment center and have LOUSY venous access. I had a port for IVIG but it quit last year and I was doing the Gamunex subq.

I will keep you posted.

Hi 4-eyes - I did the Rituxan last year and so far, it seems to be doing well. I'm trying to remember the protocol, but I do know they have been checking my levels every 3 months to see if I need additional Rituxan. So far, my levels are so low, they are not recommending any additional Rituxan and it has been almost a year and a half since my original doses. My mg has been under pretty good control. The only time I have had any issues was when I started having bad problems with my back (lifelong problems) and ended up in bed for about 2 weeks. My mg did not do well during the time my back was so problematic, but now that I am getting steroid injections in my back, the mg seems to be doing ok. I don't know why the mg would react to the back pain, but I see my neuro next week and I'm going to ask at that time.

Good luck with the Rituxan. I am very pleased with the results. Of course, I'm still on IVIG and Imuran; but doing much better with the mg overall.

Juanita,

Do you have ACHR or MuSK antibodies? Sorry I don't recall.

It sounds like you've had a pretty good response. My neuro does the Rituxan in one dose instead of 4 weekly doses like many have done. The dose is based on body area (height and weight). I like that as it's custom-dosed for me.

Thanks again for chiming in on this!

I had mine in 2 doses based on body area also.

I think I have ACHR - The normal test was positive for me the first time around.

Good luck!

4-eyes, I really appreciate your updates, as I'm sure everyone else does! I'm sorry things haven't gone as you would have liked.

I hope the new regimen does the trick!!!

:grouphug:
Annie