Hello, I am also new to this site. My husband has MG, was once on Celcept which his Dr's in Charlottsville Va. kept him on for 2 years, along with IVIG infusions. At one point, the Dr's decided to withhole the IVIG to see if the Celcept would take over, they then changed him to Immuran...he has been on this for 1 year and can see a great improvement in him over the celcept. I'm not sure he will ever be able to be taken completely off the IVIG infusions, but as he approaches retirement, I find that I may have to work many years longer so my health insurance will be primary over SS.
My husband also has the double vision and have extensive testing at UVA, it was determined there is nothing they can do about that.
As a caregiver, my heart breaks to see a man who was so robust be brought down to his knees.
Blessings on your journey
Quote:
Originally Posted by anni77777
Hello all!! I am new to this site and this is my first post. I have read some of your threads and have a question. I was diagnosed with MG November 2009 after about 5 months of heavy non-stop coughing and every wrong diagnosis you could thing of. I saw doctors, specialists, herbalists, anyone you could think of. My diagnosis came right before my thymectomy (which was thought to be a thymoma at the time and MG wasnt even mentioned until I emailed my thymus specialist and informed him of my double vision, extreme fatigue and muscle weakness). My "official" diagnosis was just ONE day before my thymectomy. I was so weak before surgery I still cant believe the head of the nuerological dept. in IU medical gave his approval for the surgery. After surgery I went into myasthenic crisis could not be extabated. I was on breathing tubes, on heavy sedation, and eventually had a trach put it. After 40 days in the ICU the trach came out and I came home (January 1st, what a wonderful day it was!!). Im currently on 30/10 of prednisone and mestinon 3 times a day. Also tons of vitamins and homeopathic meds. Anyway, I went and seen a specialist in NY last week who has been working with MG patients for over 30 years. Dr. Adam Bender is his name. He told me that either immuran or cellcept is what he recommends to taper off of prednisone and that it does wonders, he, like my other nuero here in town of course recommended cellcept over immuran because its a more "designer" drug, whatever that means. My question to all of you that have been on either one is how you have reacted to it and if you prefer one over the other (if you have been on both). At this time I still do not have medicaid and with my current crappy insurance cellcept would run about $237.00 for a month supply..immuran running a little bit less than that. I would really love some input from you guys as there is nothing more I would love right now than to get off of prednisone. Over the last 4 months I have gained back the 25lbs I lost in the hospital and my face has blown up like a balloon. Also I feel that when I get up in the morning the back of my foot hurts and it feels like the muscle and bone there is getting weaker. I have talked to several people in other forums who have mentioned bone deterioration with prednisone and one gentlemen even mentioned that he broke his ankle numerous times. Im kind of freaking out a bit and really REALLY would love to get off of this scary drug. Any input my friends?  |