CIDP treatment

January 25, 2009 at 3:26 pm

I found the following website yesterday and think that the discussion of treatment options is very good. [url][/url]. The medical monitors of the site are active in the GBS/CIDP foundation. Look under treatment for options and recommendations.

Two other comments. On of the neuromuscular specialists at the GBS/CIDP meeting is a very strong advocate of pulse steroids and has recently published a paper on the use of oral steroids in CIDP. Pulse steroids have a lot less effect on control of blood sugar than daily or even every other day steroids. In the article, it said that the treatment was tolerated okay by one diabetic. In a pervious article with more patients and using IV steroids, the incidence of diabetic concerns was 6% with pulse steroids as opposed to 17%with sustained steroids. So this is worth considering especially if your diabetes is not “brittle”, there is not a lot of organ problems already from diabetes, and if you are willing to be extra careful in monitoring sugars for the day or so after the pulse of steroids (often given weekly at first and then less frequently) until you know how your body acts.

My second comment is that it might really be worth it to go to one of the neurologists on the GBS/CIDP board rather than just to a place, even one as famous as Mayo. One difference is it seems to me at the Symposium that the physicians there tried to listen to the real experiences of people with CIDP. It has also seemed to me that sometimes neurologists try to tell people what they ought to be feeling with CIDP rather than listening to what they are feeling. The biggest point to emphasize this is how many people argue that fatigue is not part of GBS/CIDP because it is not in the textbooks.
WithHope for a cure of these diseases