Cytoxan for MG?
 

Has anyone heard of docs using cytosan(anti-cancer drug) for MG?

I hadn't heard of it, but googled Cytoxan Myasthenia gravis, and found the following: Your doctor may also prescribe other medications that alter your immune system, such as azathioprine (Imuran), mycophenolate mofetil (CellCept), cyclophosphamide (Cytoxan) or cyclosporine (Sandimmune, Neoral). The site was http://www.cnn.com/HEALTH/library/DS/00375.html
and the info was toward the bottom of the page. Apparently it is fairly common. Good question. Are they planning on prescribing that for you?
Hugs,

Yes. If you Google, Myasthenia + Cytoxan there are loads of articles. It is usually used for more severe myasthenia and patients refractory to other meds.

Yes, Google "Revimmune + myasthenia." This is a very new and exciting treatment (Revimmune). Cytoxan is a cancer drug used in high doses to "reboot" the immune system. This drug has been developed to treat all autoimmune disease. Google "Rebooting Times HiCy" for a wonderful blog detailing an MS patient's experience with this protocol.

Immune Rebooting
 

Yes, high-dose cytoxan is used for the 'immune reboot' protocol that was developed Dr. Drachman and Dr. Brodsky (Johns Hopkins U). AngieB on this forum has gone through the treatment and I may be another one! I just received word from Dr. Drachman's office today that they're ready to set up my first consult. I am sooo excited!:)

Giving Myasthenia Gravis the (Re)Boot (Dr. Drachman and the protocol)

On the Trail of a Cure (A history of Dr. Brodsky and the protocol)

As Dr. Drachman stated at the MGFA 2007 conference, rebooting for myasthenics remains a treatment for refractory patients for now.

Jennifer in ON
Dx in 1986

High dose Cytoxan
 

I am a patient of Dr, Drachman. I have been for over three years for MG. After being denied Cytoxan treatment previously. He yesterday gave me the go ahead. I will more than likely get my start date by early next week. He has to run it by DR. Brodsky who is the Oncologist in the study and who is the money man for the Pharmaceutical company. I will keep you all posted.

Cylosporine
 

I haven't heard of cytoxan, but my husband has been taking cyclosporine for about 6 months now. Pretty nasty stuff!

Dr. Drachman..
 

Dear notwhatIordered:

I saw Dr. Drachman in August and he originally thought that I'd be a candidate for the reboot but I'm not. Simply because I have not exhausted all the immunosuppressant possibilities available. After 5 years, CellCept was not doing the trick. He's switched me to prograf. I continue to take prednisone daily (for the past 5 years, too).

I see Dr. D. again in February.

I've had MG since 1986 but went into a relapse in 2001 due to stress at work. For about 15 years, my symptoms were controlled with varying doses of mestinon. Then, when the relapse hit, I was started on prednisone, ivig, cellcept and a few other meds to control the side-effects of the MG drugs. Fun, eh?

Jennifer in St. Catharines, ON
36 yrs old and 4 years on LTD :(

MG
 

I have had MG for 3 years and have already used Cellcept, Imuran and Cyclosporine all didn't work. The cyclosporine was starting to damage
my kidneys so I just stoped taking it a couple of weeks ago. I also had
Plasma Pherisis and IVIG infusions. Iam still taking prednsone which had
given me glaucoma and cateracs and had to have both lenses replaced
on my eyes. It also has given me Barrets disease, Diabeties and High blood pressure. I also am on Mestinon.
Is Cytoxan the same as Cyclosporine?

Ted Poole

No, Cytoxan was originally developed as a cancer drug. When used to "reboot" the immune system it's called Revimmune or high dose cytoxan theraphy.

cellcept question and genl talk
 

Hi all,
I've been reading this thread and am amazed at the number of people who see Dr. Drachman. I do too. After thymectomy (due to thymoma), I'm doing fine with cellcept and mestinon. Recently am trying to cut down on the mestinon.

I'm a little concerned to see that people have relapsed. I've never really felt like asking but are relapses common?? My initial time with MG (dx in Nov 05) was pretty scary (difficulty eating, feeling I was choking, and arms/legs not working) Now I'm doing fine, working full time, enjoying life. Hope I continue to do ok for a long time.

I'm glad to hear that there's additional treatment out there, but hope that everyone will find something that works before having to go for the more drastic treatment. I've been on Cell cept (500 mg 2 tablets/2x per day since 3/06. Does anyone have any thoughts on this? Don't like pills in general but it seems to work for me.

Lisa

I've relapsed. I had a 2.5 year drug dependent remission that ended about 3 years ago. Been really bad ever since. I take Cellcept as well.

cellcept also
 

hi folks...i also take cellcept...2500 mg a day...split am and pm....also take 20 mg of prednisone...down from 60 mg..soon to go to ...20 mg one day 10 the next..and then 12/15 go to 20 mg every other day....i take mestinon as needed..i havnt had any bed effects from prednisone but weight gain...i have noticed small skin growths that the docs have said are benign..i was bad....when mg started in april..couldnt speak well or chew.....VERY hard to breathe and couldnt if i was laying down...im better now execpt for breathing is still difficult..not sure of the prednisone or the cellcept is responsible for improvment...ill see more as i wean off prednisone more......:-)

I also takes Cellcept (500mg x2, am and pm) since 8/21, plus prednisone (started at 10 mg/day, now at 75 ) and 5 x 60 mg Mestinon + 1 delayed 180mg. After 2.5 months , the only improvements are the drooping of one eye-lid and the double vision which disappeared, swallowing and chewing difficulties, plus arm muscle weakness are still present.
I also had two IVIg cures with very little effect.
Besides this, I do not appear to have any significant side-effect (yet?)
If the situation is still the same at the end of the month, my neurologist would like to try plasmapheresis but I'm not very keen for it, if they have to be repeated monthly or so…

notwhatIordered update?
 

Have you gone through the reboot? Let us know.

No, I just recently read about that therapy and I don't know how it is considered here in France. I see my neurologist in 3 weeks and will ask her. But I doubt I would qualify as I have only been affected in May and diagnosed in June and my 3 month therapy seems short to consider my MG as refractory, which appears to me as mandatory for a reboot?

No, not you neutro. The question was for notwhatIordered..