Reply To: Relapse

November 11, 2018 at 1:19 pm

I’ve battled CIDP for several years now. My initial decline was rather rapid – occurring over several weeks. After multiple failed attempts of treatment (steroids shut down my liver, nerve blocks made my hair fall out and tissue die around the injection site, methotrexate made me miserable), Mayo Clinic saved my life. I started IVIG (Caramune-spelling?) and Rituxin as an experimental trial and it saved my life. A subsequent reaction to my IVIG moved me to another one (Gammagard) and it was great! Continued IVIG weekly, Rituxin every four months, added Cellcept daily, physical therapy, and Botox in my neck, back, shoulders, and jaw (so I can eat, otherwise my mouth won’t open).
Last January I started titration to wean off of everything. I was losing my insurance and feeling so good, I took a risk. It went well for a few months and then it came back with a vengeance. Getting back on all the meds and treatment now, unfortunately. But, grateful to have a clear reminder that although I hate constantly being in treatment, I completely hate my physical existence otherwise.

A few notes. My port is the best decision I ever made. It doesn’t bother me, never notice it anymore, my arms and veins are happier. Most of us are in this for the long term. The treatment requires infusions of medicine (IVIG) that is hard on your veins. As well as the Rituxin. Do your body a favor. (P.S. 40 yo single mom of two and I’m proud of my port. I wear swimsuits, tanks, scrappy dresses. I don’t care what others think. My body, my health, my priority.)

IVIG: everyone responds to different infusion rates. Find yours and be vocal each and every time. Ensure they flush the line because it reacts with saline (I get fluids before and after infusions). Some nasty effects occur if they don’t flush the line.

Listen to your body. Speak up and be persistent. You have to live with it and so ensure you do the best for your body each and every single day.