Reboot

[Angie B]

Hi. Im new to this forum but I have found all the threads very informative. I was diagnosed with MG 3 years ago and have had all the conventional treatments (Mestinon, Prednisone, IVIG, Pheresis, Thymectomy). These have worked fairly well and although I have not had a consistant time period of feeling great. The MG seems to affect my eye, swallowing and lungs primarily. In Sept I had a flare that put me on a ventilator for a week. That being said, I have been doing a lot of research on some more aggresive therapies for MG for those that do not respond to standard protocal. There are many studies that have been done on "rebooting" the immune system through chemotherapy and partial Bone Marrow Transplants. Anyone have any information or experience with that? I am 38 have 3 kids under 10 and am looking for an agressive treatment or even a cure. John's Hopkins has incredible data with very promising results using the "reboot". Any thoughts? Thanks.

[Gabe]

Hi Angie - welcome to the forum...I had a thymectomy in March, am treated now with IVIg, Imuran and Mestinon - have been on Prednisone but I am not on it now. I am 43 and have a 13 year old. My MG initially affected my speech, swallowing and vision - later my breathing and my limbs. I have never had a breathing crisis. I am interested in doing anything to halt this thing but haven't heard of the treatment that you are talking about involving the bone marrow. I did a google search and found several articles...these seem to be what you are talking about. Both articles are from 2003. It would be interesting to see if there is something more current. Keep us posted.
Thanks,
Gabe

http://www.neurologyreviews.com/dec04/nr_dec04_bonemarrow.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12509845&dopt=Abstract

[Angie B]

Thanks Gabe. I have a meeting tomorrow with my Neuro (who is the best and an expert in MG) to discuss going to Johns Hopkins. She did her residency there and they have a superb Neuro department. I got a lot of my "reboot" research from her as well as the web. I will keep you posted and let you know what I find out. The process is quite long and involved but if the overall outcome is a cure or remission....

Thanks for the links.

[Gabe]

Angie,
Is your neurologist in Minnesota? If you don't mind sharing who you see it would be great. I am interested in seeing a MG specialist that "gets it".
Thanks,
Gabe

[Angie B]

Sure Gabe. I see Dr. Susan Evans at Noran Neurological in Mpls (also clinics in Fridley and Maplewood) There are several Nuerologists (at least 4 that I know of) at Noran that are wonderful with MG. I have been extremely happy with the whole staff there and if your looking for a solid group of Neuro's I would highly suggest giving them a call. Im not sure if Dr. Evans is seeing new patients but I have not had a bad experience with any of the Doc's there- I've seen many while in the hospital. Good luck. Let me know how it goes.

Angie

[Gabe]

Thanks Angie!
Gabe

[Angie B]

Hi Everyone.
It has been really nice to read all the threads and I have gotten such encouragement form reading all your posts.
I have decided to try the "reboot" and will be entering the hospital next Monday. The reboot consists of high-dose cytoxin for 4 days, then a shot to stimulate health immune growth, and I mean healthy. There are of course risks and the chance that it could make me sick for a couple of weeks...but the possibility of remission is great! Johns Hopkins has been doing this for awhile with amazing results. A large portion of the patients have experienced littlle to no myasthenic symptions after the inital dose. Doing cardio classes, living life, taking care of kids, moving, breathing....
I will keep you posted, if you'd like, on this fairly new treatment, or new protocol.
Thanks again for allowing me to come into your community and gain some insite into this disease.

Angie

[GUMBY]

Good luck to you. I wish you all the best in this world and yes , keep us posted on all the details if you can. Are you going to Hopkins for this???

[Gabe]

Good luck Angie! Keep us posted..
Gabe

[Angie B]

I wanted to post a quick update. I received a "reboot" late Nov to early Dec. This included 4 days of high-dose Cytoxan (chemotherapy) in the hospital. This was followed by multiple doses of a drug to stimulate bone marrow growth (painful process!) It's an aggressive treatment and a bit risky, but I am convinced it worked. I have been waking up without pain, double vision, fatigue and I can swallow! I have lived for 3 years never knowing what kind of day I would have. 16 hospitalizations in under 3 years...My eye has very little droop and breaths are full. I realize it's a bit early to jump on tihs one, but I do need to say that I have not felt this good in years. My Neuro was thrilled when I saw her today- strength was better then she has ever seen from me. All I told her was thank you for taking the risk.
I don't know if it would work for everyone, and the side effects are not great...in fact down right horrible, but If this can give me back a life..welll worth it.
Like I mentioned earlier, j.Hopkins has done the most research on this one.

Take care everyone and have a wonderful Christmas!

Angie

[GUMBY]

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.

[Angie B]

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!

[GUMBY]

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

[loisba]

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

[MG in MD]

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

[evy o.]

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....

[loisba]

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/ticker/article.aspx?feed=BW&date=20070228&id=6548331
Hugs,

[The Canadian]

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

[loisba]

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

[Angie B]

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

[evy o.]

Thanks for all your information Angie. I am meeting with my neuro on Wed - she too has extensive knowledge re MG. I have done a lot of research about the high dose Cytoxan and not fully decided yet. I have significant adverse reactions to all conventional treatments so looking at the reboot option. I am nurse by background so pretty familiar with how nasty a drug Cytoxan is in routine doses, and pretty sure the high dose must be rough to get through. I have very unusual couse of MG - almost symptom free, but go into full crisis with respiratory failure within about 1/2 hour. No warning signs so my docs all feel a pretty dangerous course - worried if happens in wrong place I would not have time to get to help. Not sure the risks of Cytoxan are worth it for me or not???
I will let you all know if I proceed with this and how it goes......