Three Year Reboot Update
 

Hi everyone,

Three years ago today I went into the hospital for a reboot aka high dose Cytoxan. After 4 days of a brutal chemo regimen, I went home for a month of recovery where my immune system died and then regrew. Except for a 4 day period of intense complications requiring re-hospitalization, it went without a hitch. The hope/theory is that this new immune system does not remember how to be so sick with MG.

Three years later and I am more than pleased. I was hoping to get "two good years" so this is just gravy! Yes, I still use MG meds, but now they actually work. I was refractory before, and despite being on large doses of 3 meds, I still was classified as IIIB in severity (V being the worst, on a vent, etc).

I consider myself to be around 90% symptom free most of the time. My stamina and strength are not as good as an unaffected woman my age, but I am totally functional. I suffered mostly with bulbar and ocular symptoms and aside from some occasional swallowing issues and slight blurry and occasional double vision, that is good, too. Most days I don't really even think about my symptoms which is a great improvement from pre-reboot times. Those days were often spent just trying to stay minimally functional, and often failing at that.

Hope this helps someone. Feel free to ask any questions.

What facility and doctor did this for you? My breathing is getting very bad, I need 12-16 hours of sleep. I am willing to try anything. What were the complications? How long before you could return to work? By normal, do you mean you can go on vacation, work in the yard and have energy after a workday to do more than sit in a recliner?

Please give me hope
thanks
kathie

My neurologist at UTSW in Dallas set me up with the oncology unit at UTSW, but it can be done other places. I originally was looking at Johns Hopkins.

I had the complication of neutropenic fever, which is a fairly rare complication. My counts just got so low, especially platelets, that I needed to have several transfusions and units of platelets as well as precautionary IV antibiotics. I was pretty sick, but bounced back once my body started producing platelets and blood cells again.

After 6 weeks I was released to do any activity as I saw fit. Prior to that I needed to be very careful and was on several meds to prevent infections.

Yes, I can generally do anything I want with a pretty quick recovery time. I do need more rest than the average person, I suppose, but vacations are a go for sure. MG really doesn't limit my life much at all now.

That is great and I hope you continue gaining strength. So glad you posted this as it keeps the rest of us hopeful.