Reply To: CIP/CIDP symptoms worsening from IVIG

July 16, 2020 at 7:53 am

Thanks to everybody for your replies!
I now read a number of the other posts and yes have not come across another story of anybody complaining about worsening symptoms from IVIG.
I am still very convinced though that my “symptoms” have been getting worse from he second day after the start of IVIG and now about 7 weeks after my last treatment I find that progression of symptoms has been slowing down for the last 2 weeks which is in line with the IVIG slowly wearing off. This brings me closer to the state where I was before starting IVIG but overall worse, and certainly no sign of improvement whatsoever.
Sometimes when I get a flu my neuropathy symptoms get worse and nerves hurt a lot and it feels like with every infection I am degrading a bit further. IVIG so far felt like I had one very strong huge long flu infection.

I mentioned Rituximab to my Neurologist and he said he cannot describe it to me and it would not be the right medication but recommended Prednisone.
I suggested plasma exchange but he was not ok with that either and wanted to try the Prednisone first.
I guess it will be a trial and error scenario….