Reply To: CIDP – HSCT Clinical Trial, Dr. Burt Chicago
I am about to hit the 3 month mark of my “re-booted” immune system. After 4 years of dealing with CIDP, I am very glad I went to Northwestern. My Neurologist was against it. IVIG worked for me, it in combination with Prednisone and Solumedrol kept me almost normal. But the occasional fight with insurance and a missed or delayed dose would bring back my symptoms quickly. I decided a year and one half ago I was going to do the trial. I had been accepted the previous November and after attending a large work event caught a nasty bug and the insurance company at the same time did not approve my IVIG dose, I ended up in the hospital for 4 days unable to walk. It only took 10 days from fully capable to unable to get out of bed on my own power. I agree the treatment will continue to get better and there is some risk in having chemotherapy in your body but I am off Prednisone and Solumedrol, I have the 4-5 hours back every two weeks that I had to sit and have an infusion. Dr. Burt plans on publishing this year so hopefully that will open up the insurance companies to approving more patients. I believe his success rate with CIDP patients is very high and if he accepts you it is because he thinks he can help you. It is a very personal choice but my only regret is I didn’t do it sooner.
Good luck to all,