Reply To: New Development, Need Advice

June 22, 2012 at 9:37 pm

Hello there- I receive IVIG and have been for almost 4 years first every week, then every 10 days and now trying to go every 2 weeks ( with not very good results so far I am afraid)- I started on Imuran at a low dose of 50mg /day as an immune suppressant to try to decrease my IVIG need from weekly infusions. I am not sure why they are recommending you add another med if your CIDP is controlled at every 5 week infusion. This seems like a very reasonable treatment schedule provided you are doing well, and tolerating the treatments well. IVIG has the best safety profile of all the CIDP treatments. Trust me, if I did not need weekly infusions and could have gone even every 2-4 weeks , I would not be on the Imuran . I tolerate it well in general, but get sick more often and fear long term risks. I would seek a second opinion if I were you at a center where they see a lot of CIDP patients. What part of the country are you in if you don’t mind me asking? There are centers of excellence listed on the website to consider. It sounds like you are not in a relapse or crisis where you need to make a decision quickly so don’t rush in and do your research. I went to Mayo clinic to see Dr Dyck and had and excellent experience . Good luck and I am happy to answer any questions!