Reply To: Not sure if IVIg is working

September 9, 2013 at 7:18 pm


I wish CIDP and its variants had black and white symptoms and predictable expectations from certain treatments. Some respond well to one treatment, but not to another, and it is not uncommon for some to feel worse before they feel better. There is no standard for recovery and results vary by individual. The good news is that your husband is getting IVIG, one of the most proven helpful treatments for CIDP!

Myelin can grow back to some extent at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is agonizingly slow but there has been little that can be done to speed up the process, except for the very expensive and experimental stem cell transplant treatment (not covered by Medicare for CIDP). Myelin regrowth can be even slower if your husband’s blood still has the anti-bodies present that caused the attack on the myelin in the first place. Plasmapheresis filters these from the blood, IVIG and Prednisone keeps the auto-immune system from producing more.

One of the newer medicines that have the potential to help treat CIDP is Dalfampridine (Ampyra). Loss of potassium can disrupt the nerve’s ability to conduct messages. Dalfampridine has been shown to help stop potassium leakage from the nerve fibers. This strengthens the signals that the brain sends through nerves whose myelin has been lost or damaged. Unfortunately it is very expensive and not yet covered by Medicare for use on CIDP patients (only for MS). What is needed is a clinical trial using Dalfampridine to treat CIDP. Without such, Dalfampridine is considered experimental for CIDP.

Another treatment option is Alpha Lipoic Acid which is available over the counter. There was a recent clinical trial using this treatment and we are waiting for the results to be posted. The clinical trial is listed here: you can also perform a search in the GBS-CIDP forums to see what others are saying about Alpha Lipoic Acid.

I hope your husband responds favorably to IVIG and begins to regain some of his lost abilities quickly.