More IV IgG?

May 23, 2009 at 11:23 pm

Since you did great with IV IgG for about 6 weeks, did you discuss getting more immunoglobulin? CIDP has ongoing damage to nerves and one usually has to continue to treat to stop this ongoing damage. Since immunoglobulin is very expensive and some people have troubles because of it or troubles getting it, so often doctors try to wait to see how often a person needs it. You need it more frequently than every six weeks. Most people need it at least every 4 weeks–some more frequently than that. Before stopping work and going on disability, please try to stop the damage by either more immunoglobulin (strongly suggest to get a loading dose again to optimize the chance for it to work and then try monthly administration) or, if this is not possible for whatever reason, consider pulse steroids–high doses of steroids given over about 4 days every month or moderately high doses of steroids given once a week. There are several papers of the use of pulse steroids–Dr Gareth Parry is one of the authors and a strong proponent of these. Pulse steroids have less side effects than daily steroids–less effect on sugar regulation, weight gain, high blood pressure, bone weakness, and sustained moodiness.

I do not know how to tie in the ice-pick migraines,except this might be from body stress telling you that you need to do something different. Having your life turned upside down is a tremendous stress.

I would like to comment on one thing that Donna said–as I recently stated in a post about GBS about the “usually quoted” number of 18 months to maximum recovery. GBS is often a one time bad attack on the nervous system and the problems are most often a result of damage that occurs at that time. It can take at least 18 months–often more to heal this damage because nerves are really slow to heal. CIDP is different than this because damage often is ongoing. Treatment with steroids or immunoglobulin stops the damage temporarily (hopefully), but then more damage can occur. So most people with CIDP have to continue to receive treatment to stop ongoing damage. If they are lucky enough to get all damage stopped and their immune system resets, then they might heal in 18 months–but it does not seem that this happens very often as lots of people talk about an up and down and up and down course–meaning that there are still times of damage occuring. I hope that this is clear and most importantly that one should be aggressive to try to stop damage from continuing to accumulate. Hopefully someday there will be a good way to reset the immune system so that we are not just limiting the effects from the damage but stopping the chance of attack and thus curing this disease.
WithHope for a cure of these diseases.