Reply To: Treatment options

It is up to the neurologist to find the best treatment, and, naturally, the insurance company has a big say in it. Treating a serious case of CIDP can be very expensive, so they want to make sure they are getting their money’s worth.

I had all standard treatments. I first had a five-day loading dose of IvIg. This did not halt the progression of my weakness, so I went back to the hospital after flunking out of rehab. I then had a second loading dose, but still did not do well in rehab and continued to decline. Then I got pneumonia and went back to the hospital. By the time I recovered from pneumonia I was paralyzed below the neck. I was then given plasma exchange and had nine treatments. I began to show improvement after about seven treatments.

As I recovered, I was put on steroids (prednisone) and an immune system suppressant (Cellcept). Prednisone can cause side effects, but I had none. The dosage was tapered down to zero over the course of about a year. Cellcept is my long-term treatment and I am tapering that down as well. I have had no side effects from Cellcept. I have not taken IvIg since my early loading doses.

Some people have side effects from IvIg, but I had none. You can read about this in older threads. PE sounds scary, but for me there were no difficulties at all. The catheter was put in under sedation, and the treatments were completely painless. I slept through most of them.

I needed eight weeks of rehab before I was strong enough to go home from the hospital.

My treatment has been extremely successful. I have no complaints. I hope your case is resolved as well as mine was.