That is just great. I was just telling one of the old timers about you yesterday wondering how you were doing. I hope it last and last forever for you. You have yourself a very merry Christmas and happy and healthy New Year to come. All the best to you. Keep us updated and thanks for letting us know.
I have one question if you can, what drugs do you use now after the reboot? Take good care.

Hi. Thanks for the words. I hope you and your family have a wonderful Christmas, too!

I am now just on Mestinon, off the Prednisone, Cellcept, IVIG and such. I am actually down to 3 tabs of Mestinon a day..hoping to decrease even more.

Bless you!

WOW. That is great. A great Christmas gift. Enjoy and stay well. Bless you too. Gumby

How wonderful for you that it seems to have worked. Do please keep us posted on your continuing progress!
Hugs,

Hi Angie. Somehow your post showed up in my Google Alert for Myasthenia Gravis. I'm so happy to hear about your success with the reboot. I'm sure I know your neurologist at Hopkins. He is very proud of the successes he has had with patients who are eligible for this procedure. And, I think you are very lucky. The reboot isn't for everybody, that's for sure. You have to be ill enough to need it, but well enough to endure it. I hope you enjoy more and more good health.

Do you belong to a support group in Minneapolis? I've been there a few times. Love your city!

MB with MG in MD

I just found this forum via a search engine. I am 45 yo female with MG. Was drug free and symptom free since 1999, then over the past 15months I have had 3 crisis. I have been hospitalized 5 times during this period. I have had significant reactions to all therapies - Prednisone, CellCept, IVIG and pheresis. Pheresis is no longer a treatment option and I am now on Cellcept and IVIG once/month. I have a white count of 2.4 and work in a hospital so infections have been an issue. My neurologist has now suggested the Cytoxan course to try reboot. She also has literature using Rituxan (another chemo drug) in combination with the Cytoxan. I am leaning toward trying this treatment as seems my disease has taken a sudden, severe spiral. I have an unusual course - no symptoms at all and able to run long distance, but I go into full crisis with no forewarning over about an hour with respiratory failure. Concerns that I will experience a crisis too far from a hospital to have successful intervention so we are looking at this aggressive treatment option. Wondering if any of you have heard anything about the addition of Rituxan with the Cytoxan? Also, do you know what the dosage is for the Cytoxan you get with this treatment option?
Also, wondering how you are feeling now a few weeks out from your treatment? Did you do the treatment at John Hopkins or with your home neurologist? thanks for all of your comments and the information you have posted....

Check out this site for some new developements on rebooting. I ran across it several days ago, but didn't think to post it until now, and I felt this thread was a good place to put it.
http://news.moneycentral.msn.com/tic...228&id=6548331
Hugs,

Yes, Angie - did you do the reboot at Johns Hopkins? At the MGFA Conference, Dr. Drachman stated that there were only 2 facilities able to handle this treatment: JH and I can't remember the other (NY or Boston or??).

J. in Ontario

Angie, how about an update/ Are you still showing the improvements? I certainly hope you are.
Hugs,

Thanks for all your support. I received 5 high doses of Cytoxan in December, here in MN. They had to do the doses in the hospital due to the high dose. I have a wonderful Neuro who did her residency at JH and is very knowledgable with MG. The doses went really well, but I spent most of Dec. in the hospital with infections, a .1 WBC and required a number of shots to boost bone marrow growth( which was very painful). It's now May and I am doing much better then I have in the last 3 years. I have had to start back on Cellcept and have had a couple of weeks here and there where I have needed prednisone. I am still on Mestinon and have chatted w/ my Neuro about additional pulse doses of cytoxan. It was the right decision for me, I had gotten to a place where the MG was no longer manageable w/ the standard protocal treatments...
Cytoxan is not for everyone, there were a lot of side effects and I have experienced symptoms of early metopause, lost most of my hair and had a number of "sick" days.
It's definitly a treatment to look at, do some reasearch on.. I found the JH site very helpful.

Good luck.
Angie