Trishaep,

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: http://clinicaltrials.gov/ct2/show/NCT00962429?term=CIDP&state1=NA%3AUS%3AOR&rank=1 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.

The important thing is to monitor muscle strength closely. A persistent loss of strength is a key indicator of this disease. If he is experiencing progressive loss of strength (not due merely to short-term fatigue), it is an indication of demyelination. For some, IvIg may provide only temporary relief from the progression of the disease. In my case, two loading doses of IvIg failed to arrest the progression of the disease, so my primary treatment was switched to plasma exchange.

There should be no problem switching back and forth between PE and IVIG. I did this myself more than once. The only downside is that the effects of IVIG to supress the auto-immune responses will be negated with PE. But it may be more important to remove most of the bad anti-bodies BEFORE going back on IVIG. Please run all this by your doctors, but I think it could give your husband’s disease the ‘kick in the pants’ you mention.

Plasma Exchange (PE) removes the stuff that IvIg puts in, so it is not usual to use both treatments. I was switched to PE after IvIg because the IvIg did not produce the desired result. In fact, I crashed only a couple of weeks after my second round of IvIg. I had nine treatments of PE in the hospital, administered through a Quinton catheter. This was followed up with a steroid (prednisone) and an immune suppressant (mycophenolate mofitil). I am no longer on prednisone, but continue with MM. I have had no signs of relapse nearly three years out.

IvIg is working for me… yahoo!

A zombie foot returned to the realm of the living today. We will see what happens on after my third infusion next month. My confidence in this treatment is high! I had CIDP problems for five years+ that was called diabetic neuropathy by medical professionals, but I knew, during all the time that a second disease was eating me up and violently spitting me out. I pretty much clawed my way out of the CIDP grave to get a competent neurologist to recognize it… Even then, it took 8 months to get IvIg treatment.

I find that mega doses of Vitamin D (50000 IU/wk) renew my energy level, as as does constant and vigorous exercise. Even when i was reduced to walking with two canes, then to crawling, I still pumped iron, then tinier iron, and swam and swam and swam.