I've been doing plasma pheresis for about 3.5 years now. I was recently asked to do a presention at a conference for pheresis nurses. I'm going to be talking about plasma pheresis from the patients's perspective and I'm focusing how nurses can help make the experience better and easier. So, I'm looking for any suggestions or ideas any of you who have been doing pheresis might have. I really want to bring these nurses good suggestions so that we as patients can have an easier time of it doing pheresis. If you have any ideas or suggestions you'd be willing to share, I'd really appreciate it! I promise to pass on your ideas.

Thanks so much,

For what or why do you have the plasma pheresis therapy???

How does that work for you? I can't do steroids and my neuro has talked about it but she doesn't know if it would help or not.

I've thought about plasmapheresis, but am not sure if it'd work for me. Plus, doesnt it use donor blood products? I have kind of a blood phobia (mostly, other people's blood...just creeped out at the thought of receiving other people's blood/blood products)

My physiatrist mentioned plasmapheresis and maybe getting it somewhere down the line. I'm a lot worried about the cost of plasmapheresis (and the whole blood phobia thing)

Does plasmapheresis have benefits? Does it usually work for everyone?

Sally, I do it for Myasthenia Gravis, but I have a good friend who is doing it for MS and it's really helping her a lot, so I thought I'd ask people on the MS forum about their advice/suggestions as well.

Newsmom and Erin,

It works well for me, but I have Myasthenia Gravis. I do have a good friend who's doing it for MS and she is getting very good results. I can't do steroids either, and PP is really the only thing that has helped my disease much at all. Erin, you only get donor plasma if your fibrinogen, which helps your blood clot, gets low. I haven't had any donor plasma in probably 3 years. Basically what happens is that they hook you up to a machine and take blood out, then they centrifuge out the plasma and return the red cells back to you. The idea is that the antibodies are in the plasma and by removing the plasma you take out the antibodies. They usually replace the lost fluids with saline, citrate, calcium, and albumin, which is a blood product, but it's not a donor thing in the way that plasma is.

I hope that helps. As I said, my friend is getting good results, so you may want to talk further with your docs about trying it.

I wish I could have it, as it could reduce platelets, of which I have four or five times normal because of Polycythemia Vera. But the hematologist says that's for emergencies. I feel like I'm an emergency, or almost one, because I have to go to Mayo Clinic and have radiation to suppress bone marrow and thus reduce platelets, or else I am thought to be heading for a stroke. My pcp and cardiologist want me to go to Mayo again, and the Mayo hematologist recommends the radiation with P32 (radioactive phosphorus). But my local hematologist thinks it might put me into the "end stage" of my disease, with too few platelets. In the meanwhile I have to have phlebotomies, which reduce red cells but does nothing for platelets. And the phlebs reduce my iron stores to nearly zero, which then causes me to have very bad cramps and spasticity in my lower leg, ankle, and foot.

Sometimes these last couple of months the foot gets stuck in an awful position--not the usual "claw" of foot spasm, but pushed back up toward the leg, or at an askew angle to the ankle. I have never even heard of someone having this strange form of spasticity and I have not had it myself until recently. It may have a different cause, maybe even MS itself or Porphyria neuropathy, but low ferritin is known to cause leg and foot problems. It's mostly in the left leg, and mostly at night. It's scary not knowing if it will become permanent. That would consign me to permanent acute pain.