Reply To: fistula for plasmapheresis
Hi Lori! I don’t get relief from PE alone. It has to be followed by IVIG right away. Hence, 5 sessions of PE + 2 days of IVIG @50 gms/day = Relief! When I say relief, it’s really 100%. Like I’m not even sick. The last time I had it done 6 months ago, I was digging and shoveling dirt in the garden afterwards. I get PE every 6 months and IVIG every 4 weeks. Unfortunately, the relief doesn’t last. After 6 weeks, my symptoms start coming back and I am back to being weak. My feet, legs and hands go back to being numb and heavy. My body is stiff and I have nerve pain. But the worst part is the flu-like symptoms – body aches and pains and general weakness. There’s really not much you can do when you have flu-like sypmtoms but to stay in bed.
The first time I had 5 sessions of PE alone in 2009, I did not see any improvement. As a matter of fact, I just ended up being paralyzed from the waist down. That’s when my doctor ordered IVIG immediately. Then, I became 100%. Prior to that, I’d been getting IVIG every 4 weeks. Like I said, I still get them every 4 weeks but it’s not as effective without PE. I think I just keeps me walking but my quality of life is very poor.
My vascular surgeon told me that there’s a product now with the FDA that could double as infusion and pheresis/dialysis port. But it could still take a while so I am exploring my options for the meantime. I’m just sick and tired of being sick and tired – perhaps like many of us here.