Reply To: New to Cidp? I think?

January 31, 2020 at 6:14 pm

I think one thing most patients don’t take into consideration is that by the time they get symptoms and find out they have CIDP, their nerves are already damaged at this point.

Then when we get treatment from whatever source we have some level of relief but the deal here you really won’t feel back to normal until your nerves have time to actually repair themselves and heal. This takes every bit of 6 months. When I started treatment, it took me 8 months before I was able to start using my legs athletically again (running with distance), even though I functioned mostly normal quickly after treatment, just not able to really do a legit run for a workout until healing took place.

In order to have healing, you need to knock down your immune system so it stops attacking your nerves. I did this with 6 months of Prednisone and Cellcept which I still take twice a day and have no side effects. Of course, this may work differently in other people but luckily this was a great course of action for me. During those first 6 months, I had ups and downs but stuck with it and was lucky in the end that healing was occurring and ended up recovering well.

I don’t have experience with IVIG, but I suppose it knocks down the immune system but needs replenishing about every 4 weeks. I like taking a pill every day vs getting hooked up to a machine. Plus I don’t have any effects of before and after the monthly IVIG session, I read here about.