Plasma Exchange (Plasmspheresis) for Small Fiber Nephropathy

[Peyt]

Hi,
I am looking at different treatment options for SFN. It seems like Plasma Exchange has the highest rate of improvement but I am not sure of what sort of side effects or risks it involves. Has anyone here had Plasma Exchange done? If yes, how was your experience( side effects, and improvements). Also, how easy was it to convince your doctor to get it done? I am assuming it's not approved under insurance.. Any info can help.
Thanks

 

[Gingergrrl]

I'm tagging @crypt0cu1t who might be able to give you some feedback on this.

 

[crypt0cu1t]

Hi,
I am looking at different treatment options for SFN. It seems like Plasma Exchange has the highest rate of improvement but I am not sure of what sort of side effects or risks it involves. Has anyone here had Plasma Exchange done? If yes, how was your experience( side effects, and improvements). Also, how easy was it to convince your doctor to get it done? I am assuming it's not approved under insurance.. Any info can help.
Thanks

I think plasma exchange could work depending on the underlying issue that's causing your SFN. I'll be completely honest though, it was extremely hard for me to get plasma exchange even with my solid diagnosises.

The side effects were extremely minimal for me, exhaustion the day of the treatment and I became slightly anemic but besides that nothing else happened. It's by far the easiest treatment to tolerate for me so far.

 

[Peyt]

I think plasma exchange could work depending on the underlying issue that's causing your SFN. I'll be completely honest though, it was extremely hard for me to get plasma exchange even with my solid diagnosises.

The side effects were extremely minimal for me, exhaustion the day of the treatment and I became slightly anemic but besides that nothing else happened. It's by far the easiest treatment to tolerate for me so far.

@crypt0cu1t , Thanks for your reply,
And how much improvement did you notice on your SFN? Is it something you only needed to do once or does it need to be repeated ? .....
I am a newbie at this, but my thoughts are, if the SFN is as a result of a past virus that is sitting in the spine/nervous system (such as Shingles) then would exchanging the plasma with clean plasma be a long term solution or is it just a matter of time before that virus will dilute the new Plasma again?

 

[crypt0cu1t]

@crypt0cu1t , Thanks for your reply,
And how much improvement did you notice on your SFN? Is it something you only needed to do once or does it need to be repeated ? .....
I am a newbie at this, but my thoughts are, if the SFN is as a result of a past virus that is sitting in the spine/nervous system (such as Shingles) then would exchanging the plasma with clean plasma be a long term solution or is it just a matter of time before that virus will dilute the new Plasma again?

Well, I actually dont think that plasmapheresis actually has an effect on viruses. All plasmapheresis does is remove all of the antibodies from your blood (good and bad) in Hope's that it will give your body time to heal while there are no antibodies present In the blood.

In terms of how many treatments you will need, I've been told that 10 seems to be the magic number for most people with our types of illness. Some people have to keep going back weekly, some go back monthly and some stop needing it after a while.

If your illness was caused by a past virus that tricked your immune system into creating autoantibodies, then your chances of benefitting from plasmapheresis are high, but you need to ask the question of whether this is autoimmune or viral? If its autoimmune, then you need to take it a step further and do some tests to determine if its B cell mediated, T cell mediated (or both) I hope this helps!