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Just curious if anybody has done this. And what the process is like and if has helped anybody. I havent responded well to solumedrol and im thinking of suggesting this to my nuero. I appreciate any input and opinions. thanks

Andre-
You're right-IVIG can be good for folks who haven't responded to steroids. Here's a link to the thread where I mention the studies that looked into this:
http://www.thisisms.com/ftopict-6851.html
My husband did really well on steroids, so it hasn't been an issue for him personally. But I know you're not alone.
Good luck and talk to your neuro-
AC

I did five rounds of plasmapheresis in a two-week period in 2007. I have PPMS, and the plasmapheresis did not help one bit. There is evidence, though, that it does help a subset of patients with relapsing remitting disease.

I found the procedure extremely unpleasant, and very grueling. It's quite bizarre to sit there watching blood flowing out of one arm, into a machine that looks like it stepped out of the 1950s, and then back into the other arm, for two or three hours. After each procedure, I was hit with a tidal. wave of exhaustion, the likes of which I'd never before experienced.

Given that the treatment did nothing for me, the experience certainly wasn't worth it. Of course, the story would be different if the results had been better...

cheerleader wrote:Andre-
You're right-IVIG can be good for folks who haven't responded to steroids. Here's a link to the thread where I mention the studies that looked into this:
http://www.thisisms.com/ftopict-6851.html
My husband did really well on steroids, so it hasn't been an issue for him personally. But I know you're not alone.
Good luck and talk to your neuro-
AC

just wanted to note that IVIG and plasmapheresis are not the same thing. IVIG is infusion given to patients intravenously in an attempt to modulate the immune system. Plasmapheresis is a process in which a patient's blood is filtered to remove their plasma, which is then replaced with a sterilized blood bank product and returned to the patient's body.

Thanks for correcting me, Marc. Didn't realize the distinction.
AC

More info on plasmapheresis:

http://www.nationalmssociety.org/about- ... index.aspx

http://www.webmd.com/multiple-sclerosis ... nge-for-ms

There is actually a significant amount of evidence for plasmapheresis for a steroid-unresponsive multiple sclerosis relapse:

In fact, there was a randomized trial for this exact scenario with sham plasmapheresis which yielded significant results (" 8 of 19 (42.1%) [improved with] active treatment compared with 1 of 17 (5.9%) [with] sham treatment"):

http://onlinelibrary.wiley.com/doi/10.1002/1531-8249(199912%2946:6%3C878::AID-ANA10%3E3.0.CO;2-Q/full

In other words, it works a little less than half the time

I also found a case series of 16 patients: http://europepmc.org/abstract/MED/16341 ... VH6T8fq.30

If I were you, I wouldn't let Marc's experience disuade you. For one, extreme exhaustion is not a common side effect of plasmapheresis. The most unpleasant part is generally having a central line placed (a large bore catheter usually inserted into the internal jugular or subclavian vein). The plasma exchange itself is generally not unpleasant and is well tolerated.

The highest risk portion of the procedure is the placing of the line (collapsed lung a small risk with subclavian lines), but there is also a risk of volume shifts/electrolyte changes or infection of the catheter.

Marc states that he has primary progressive MS for which this treatment is unproven. Unfortunately, it did not help him, but you are probably a better candidate for the treatment than he was.

If you are having a true relapse with significant enough symptoms that you would be willing to accept the inconvenience/risk, you may want to consider it.

best of luck. let us know what happens.