Reply To: Recent CIDP diagnosis

Have you talked to your neurologist about trying IVIG as your treatment? I first started on Pred when I was first diagnosed and I didn’t see much improvement and I HATED the side effects of Pred… side effects to me were almost worse than my CIDP. So my neurologist started me on IVIG (immunoglobulin IV). I was started on the loading dose recommended for my body weight and then over time slowly tapered down the dosage and I have been able to increase the time in between my infusions. I am lucky as my insurance covers the infusions. I also have not had any side effects at all except a mild headache and feeling a little tired for a day or two after the infusions. I am not in remission but as long as I get my IVIG every 4 to 5 weeks I don’t have any active symptoms of my CIDP. Since I started IVIG pretty much right after I was diagnosed my body didn’t have a lot of time to attach and cause permanent damage to my nerves. I am hoping to go into remission one day but as for now, if I stop the IVIG I get symptoms again. My doctor said some people’s CIDP burns itself out over years and years… I am hoping I am one of those people. I was diagnosed in March of 2011 – due to a H1N1 flu vaccine I received. I have been on IVIG for 7 years now and doing good. I get Gamunux C 10% solution. Everyone reacts differently to IVIG and some people have side effects and for some it doesn’t product any good effects but I really think it is worth a try if your insurance covers the infusions. I get to forget about my CIDP for 4 to 5 weeks and live my life pretty much as i did before the diagnosis. Just a little bit slower as I do have some mild weakness in my muscles. Good luck.