Reply To: Hello from Houston

Hi Jeff, this is Chirpybirdy. Yes, I did try prednisone as my first line of treatment while I was waiting to get approved for the IVIG. I hated it!!! I was in Florida on my vacation and the side effects were driving me crazy. I was agitated and short tempered. I also could not sleep a wink, would be up all night long. I remember calling my neurologist and telling her that I stopped all the pred. I could not take it. So she got me approved for my first infusion right after I got back from my vacation. I have been on IVIG as the only treatment for 5 years now. I have been lucky and don’t have any pain in my legs or feet so I do not need any pain medication. So far I have continued to respond really well to the IVIG. I have just pushed my monthly infusions out from every 4 weeks to every 5 weeks now and am not experiencing any problems. I hope to be able to push them out even further but am also afraid to try as I don’t want to start having problems. I am also nervous. I have been seeing a CIDP specialist at the U of MN now for many years. He just left the U so I have to start seeing a new neurologist… not happy as I really liked my current neurologist. I have met his colleague and he seems nice so hopefully it will be a good transition. I also take hight levels of B12 and D3 vitamins since being diagnosed. Was told that they can help.