It sounds like you, Juanitad are receiving a lower dose and less intensive treatment than 4-eyes had and you mentioned in several cases similar to yours. How would you define your muscle weakness and fatigue? 4-eyes, you mentioned after 1 year you can go to work and to the gym.

I have an appointment with my Neuro in a couple of weeks and would like to discuss this with him (Cytoxan) but only if my condition is in some way similar to the two of you. I am 69 years old.

I also am on IGIV, 2 days every 6 weeks. Down from 2 treatments a month. Mestinon 5x60 mg.daily. Prednisone, 30 mg. EOD down from 120 mg. EOD, but I do not know if my symptoms are as severe as both of you? I’ll explain.

In June of 08 I started having double vision and ptosis.

I was diagnosed with MG in December of 08. Symptoms were still serious ptosis and double vision. Less serious problems chewing, swallowing and a trouble walking. In January, 09.I started having much more trouble walking and had my first and only crisis. Double vision and ptosis were virtually gone when I started Prednisone. 2009 and 2010 were so miserable I could not believe what was happening to me. I had so much muscle fatigue and I spent days on end that I could barely get out of my chair or bed. When I crashed like that it would be for 3 to 5 days at a time and it would happen 3 to 4 times a month.
My face swelling went down I believe with the prednisone reduction. ??

The rest of the time on better daysI could get out of the house and depending on how fatigued I was and on those days do more and able to do some small jobs round the house even though my muscle coordination was real awkward making everything difficult and resulting in more fatigue and recovery time.

For the last 1 ½ years my neuro consideres me stabilized. I crash very seldom and then usually only for one day. I am still able to do small jobs around the house and it still puts me down but I recover faster with rest. Also I am getting weaker. Not able to lift as much as I could on a good day before being "stabilized" because I am still not able to build muscle. (I was in really good physical condition when I got sick.) I hope you guys know what I am talking about. The difference between fatigue and weakness. I now almost always feel good at rest when I haven’t exerted myself. At times I have a little shortness of breath at rest and always with exertion. I am a lot more confident driving now because my reflexes are better. I am walking better now but sometimes it seems like my legs and hip or core muscles are not in sink causing a slightly unusual gait. And then there are the side effects of the meds.

I am grateful for my improvement but with my muscles getting weaker, I know there is no chance for improvement with exercise. (I try.)

I am not asking for any advice but would just just like to know if either of you were in much worse condition than I am right now. And that is why you decided to try Cytoxan.

Cowgirlup, you posted you were starting Cytoxan on 5/11/11. In January you posted you were doing Plasmapheresis. Did you change your mind about Cytoxan?

Thanks a lot;

Scrubbs