I'm Back! Kinda....
 

Hi all! I know I've been MIA for a while but I have been lurking the boards every once and a while so I figured I would update y'all for what has been going on.

To those who don't know nor remember me....I was diagnosed in 2008 with MG and my main issue was bulbar symptoms, mostly respiratory which requires O2 24/7. Well, I was FINALLY approved for SSDI in July!! I also have finally found a drug that works, Prograf!

I went through Mestinon, then Mestinon and Prednisone, then Mesty, Pred, and Cellcept. Then back to Mesty, then mesty and pred again, then Mesty, Pred, and Prograf, until finally I'm at Mesty 60mg every 3hrs and Prograf 4mg twice a day. I hope you guys can follow that, lol.

In case you wanna know, Prograf was incredibly hard to get. Even my insurance company wouldn't approve it with nor without proof. I had to summon the help of a friend and after there was proof that it worked I was finally able to get it through Astellas.

So currently I am doing great and I have a thymectomy scheduled for Tuesday!! It will be a transsternal since my thymus is enlarged and due to my serious bulbar issues my neurologist wants to make sure it is all out. I just told the surgeon to make it pretty since I don't want to ruin one of my best assets, lol.

I hope you guys are doing great and please pray that the surgeon is a master with my incision, lol. Take care and I hope to hear from you guys soon!

Thanks for update ... Good luck with surg and recovery. Wishing you the best!!

What you say is very interesting (that only the Prograf led to improvement and all the other meds didn't).
There are studies that show that certain types of MG respond much better to prograf.

I hope you don't mind me asking,

Do you know what type of antibodies you have?
Was your EMG diagnostic?
How long did it take for the Prograf to work?

Good luck with your surgery, and hope it leads to further improvement.

Thanks Guys!!

Alice: No antibodies showed up on my blood test that was almost 3 years ago. The EMG was abnormal. The prograf took around a month before I saw improvement and at 3 months I was at my best. My saturation levels were outstanding. Since I've weaned off the prednisone, from 5mg, I've had to up my dosage from 3mg 2x daily to 4mg 2x daily.

Good for you young lady - may your future continue on the right path and the surgery be a great success...
Randy

cherry,

I am happy for all your great news! I hope you have a speedy recovery.:hug: