February 22, 2012 at 5:17 pm #103562
Hello there! I just wanted to check if anybody has gotten a fistula for regular plasmapheresis and if that is an option I’ve gotten to the point where I need to get pheresis maybe every 2 – 3 months. In the past, I got it every 6 months and I had the central venous catheter each time. If not for the catheter, I would gladly get the pheresis more often because it gives me relief, albeit for only a short time – 8 weeks at the most. The central venous catheter is very uncomfortable and since I get it regularly, I’m worried how long my subclavian vein will hold up. I am planning to discuss this with my doctor when I see him next week but for the meantime I’m very eager to find out if anybody in the group has gotten the fistula and if yes, I would like to find out if there are side effects. All the best ~February 22, 2012 at 11:59 pm #103595
maria—member MarkEns has a lot of knowledge on PE and was very helpful to me recently when i tried it for the first time. In a older post i had on here he mentioned the different options for more “permanent” methods of venous access.
I had PE for the first time last month—a series of 5. i didnt notice a significant improvement—some, but not a lot. just wondering did you feel relief from the pe right away, did you feel anything after your first 5 treatments. What do you mean by relief? i was looking for strenght increase from it–but it didnt do much.February 23, 2012 at 1:01 am #103638
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.February 24, 2012 at 8:45 pm #103806
Have they tried to use the anacubica (sp?) veins in your arms? I am currently having PE every three weeks and they use a 16 ga needle in each arm and I have had no problems. Use a numbing cream about an hour before the sticks and have no pain. The down side is you have to keep your arms straight during the procedure. On occasion they use an angio cath in the wrist for the return line which allows the use of one arm during the procedure. I have been doing PE this way for well over five years and have had the procedures as often as weekly using the vein sticks. My veins are holding us fine.
My Neuro tells me that fistulas do not hold up for PE. There is a newer port that is under the skin in the chest and from what my Red Cross nurses tell me they work very well. I am saving this as a back up to my vein sticks. To use the vein stick, you have to be very well hydrated and after the procedure you need to ice the access sites off and on for several hours after the procedure. This helps the veins recover. Hope this helps. Good luck.
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