Reply To: IVIG stopped working after 10 years

February 17, 2020 at 1:30 am

Hello, Chirpybirdy.

I feel for you! This response is not so much advice but sharing my own experience with treating CIDP. The first thing I’ll say that you should ensure that your neurologist is associated with one of the centers of excellence listed on the forum’s website. I had to try 3 neurologists before I found one that knew what he was doing.

I was getting IVIG every 5-7 weeks since 2007 for a primary immunodeficiency. It was only after I switched to every 8 weeks in 2016 that I started showing symptoms of CIDP. After getting high-dose IVIG for 3 days, my symptoms slowly went away, and I was “cured” for over a year. Then, in 2018, my symptoms came right back, stronger than ever. This time, high-dose IVIG didn’t help at all, and I was on the “roller coaster” for over 4 months. That’s when the 3rd neurologist decided to try something new, and that was oral prednisone combined with high-dose IVIG. My symptoms gradually went away over the next 4 months, and by the end of 2018, they were gone. My vein access got worse and worse, and after one nurse tried 7 times (!!!) to access a vein, I decided to make the switch to SCIG. It’s been life changing! I can now travel with all of my infusion supplies, and even though I infuse once a week, it only takes about 2 hours rather than the 6 hour IVIG.

My prednisone was gradually reduced from 60mg/day to 2.5mg/day, and I’m now experimenting with reducing my weekly SCIG dosage.

I’d be scared of trying immune suppressants, but if you’re not okay with prednisone, it might be worthwhile to try it. Get on board with a good neurologist, and see what they have to say.

Good luck!