Has anyone on PR tried Plasmapheresis for any purpose?

[Gingergrrl]

I am very curious if anyone on PR has ever tried plasmapheresis as a treatment to remove auto-antibodies or for any purpose?

I know it is rare in the United States, and I do not believe it will end up being offered to me, but am very curious if anyone here has tried it at any time for any reason.

If so, I would love to hear your experiences and how you tolerated it and if it helped or made things worse, etc.

Thank you in advance.

 

[alex3619]

I am interested in hearing about this too. Its a good question, @Gingergrrl.

 

[Gingergrrl]

I am interested in hearing about this too. Its a good question, @Gingergrrl.

Thanks, Alex, and am really hoping for some replies! But I know it is possible that no one on PR has ever done PP. What led you to be interested in this topic?

 

[alex3619]

This topic has come up before. I had a brief exchange with @Jonathan Edwards about it. PP might clear antibodies. A fast but potentially dangerous way to test is to clean the blood of antibodies. Its only temporary though, but if it works then it is yet more evidence of antibody involvement, and if it does not work then it indicates that Rituximab works by some other mechanism.

 

[Gingergrrl]

This topic has come up before. I had a brief exchange with @Jonathan Edwards about it. PP might clear antibodies. A fast but potentially dangerous way to test is to clean the blood of antibodies. Its only temporary though, but if it works then it is yet more evidence of antibody involvement, and if it does not work then it indicates that Rituximab works by some other mechanism.

Thanks and that makes sense. I know it is potentially very dangerous and it's removal of the auto-antibodies are temporary. But if it worked in my case, it would be very good to know.

When you compare it to RTX, isn't it a totally different method though (plasma removal/exchange versus suppressing part of the immune system by killing of B-cells?) This part confused me.

 

[alex3619]

Yes, RTX removes the source of antibodies but not antibodies, whereas this will remove antibodies but not the producing cells.

 

[charles shepherd]

This is going back about 30 years but when I was first diagnosed with ME by Dr Melvin Ramsay and went up to see Professor Peter Behan in Glasgow, and got involved with some of the research he was doing, this included the use of plasmapharesis in a small number of cases.

I also acted as a guinea pig for what was a very experimental form of treatment for ME/CFS at the time - along with a number of other immunomodulatory treatments.

The numbers involved were obviously very small but I gained no benefit and I think I am correct in saying that this was the case with everyone else.

Of course, negative results from very small studies like this have to carry a note of causation - it does not mean the an approach like this could be of benefit to a sub-group of people with ME/CFS

 

[Sidereal]

This is going back about 30 years but when I was first diagnosed with ME by Dr Melvin Ramsay and went up to see Professor Peter Behan in Glasgow, and got involved with some of the research he was doing, this included the use of plasmapharesis in a small number of cases.

I also acted as a guinea pig for what was a very experimental form of treatment for ME/CFS at the time - along with a number of other immunomodulatory treatments.

Thanks for the info, I had no idea Behan had tried plasmapharesis on ME patients. When you say a number of other immunomodulatory treatments, do you recall the drugs used? I think I read he had used prednisone and azathioprine without success.

 

[Gingergrrl]

@charles shepherd How many plasmapheresis treatments did you have? I was also curious if you were ever tested for specific auto-antibodies?

In your opinion, if someone tests positive for a specific auto-antibody (in my case N-type calcium channel Ab's) would plasmapheresis make sense to try to eliminate or reduce them (vs RTX or IVIG?)

I know you cannot give medical advise and please just give your opinion in the most general terms. I really appreciate any info you can add.

ETA: Also would these treatments be more appropriate for someone who tests positive for auto-antibodies vs. someone who has not? I know they are sledgehammer treatments with big risks but Dr. Behan must have felt they were worth it which gives me hope.