new drugs

February 16, 2009 at 3:28 pm

I heard a story on the news that there was a study done with people that had MS. A young man had been in remission for 5 years after stem cell therapy using his own stem cells from bone marrow . I have read on line that there have been a few people with CIDP that have benefitted from this too.

My son has had cidp for 31/2 years, starting at age 15. One thing I noticed when I first suspected something was wrong was that his hair was thinning and he wasn’t growing. a few months later he developed the numbness in his legs and hands leading to the loss of reflexes, strength and balance. He has been up and down ever since.

He is up right now. He had Rituxin in Sept 08 and has been inproving since. We area not sure if it is the Rituxin or just the natural course of the disease. Although it was a definite turn around. He is still on IVIG 1/month, 20 mg of prednisone /day and atenolol for blood pressure and hand tremors. He works out at the gym religiosly and tries to eat healthy.

THe young man with MS was part of a a small study. He was pretty bad before the treatment. One of the things he said was that when he started getting better, his hair grew back.

I was wondering if anyone else with CIDP had experienced hair loss at the onset of the disease.

I also would like to know what studies or proof (that rituxin is used with CIDP )did everyone use to get the insurance company to pay the bill?