Plasmapheresis Is Good

Lisa,

I have to ask the same question as Bill, why hospitalized? I go to my hospital’s in-patient dialysis unit, but they treat me as if I was an out-patient. The process takes about 2.5 hours, and I am a big guy. If you are small, it might take only about an hour.

By the way, at the Symposium in November, one the the doctors, I think Asbury, but I now don’t remember, said that 4 plasmapheresis treatments were better than 3, but 5 were not really better than 4. He was talking about GBS, but it still might apply for progressive CIDP. For your first round, I would still stick with 5, but if it becomes your main treatment, then you might experiment with 4.

Unlike Bill, I needed IVig once a week. It took 8 hours to do my infusion (like I said, I am a big guy) and it did not work that well. For me, PP is more convenient. I am able to go 26 to 27 days between treatment rounds. I then get 4 treatments every other day (skipping weekends).

Unlike Bill, I have stayed with my tunnel catheter. I have had it for over 1.5 years, with no problems with sepsis or thrombosis. Eventually, I too will get a fistula, but I am trying to put it off. Even with a fistula, venous access could be a long-term problem.

I hope your experience is as good as mine is. Pretty much, without it, I cannot function. With it, I lead a 85% normal life (10% abnormal from the PP itself — what’s normal about a tube in your neck? and 5% abnormal from CIDP effects that don’t quite go away).

There is only one downside for me. I must hydrate. I drink at least 0.5 gallons of water a day, in addition to whatever else I might drink, starting two days before and continuing during the treatments. I urinate a lot during this time. However, I develop low blood pressure from the treatment and hydrating minimizes the problem.

Godspeed with it.
MarkEns