Plasma Exchange Treatment and Tips: Readers' Stories

Read what the experience is really like from people who have been there.

Plasma exchange (plasmapheresis) is used as a treatment for several conditions, such as Tysabri-related PML, some forms of multiple sclerosis (MS), and Guillain-Barre syndrome, among others. Although it is described as a safe procedure that is only "minimally-invasive," it can seem intimidating to someone who has never had a treatment. 

I asked people to share their experiences around plasma exchange (and any tips they might have for making the treatment more pleasant).

Here are some of the responses I received: 

  • I have had MS since 1985. I began plasma exchange in 1988. I had it done monthly and never had an exacerbation for the next 13 years. I stupidly began to think I had MS beat and reduced my treatment to quarterly, then semi-yearly, then even less often. I then experienced a major attack. I have since gone back to monthy treatment and my deficits from the attack in 2000 are resolving, but slowly. I am back playing some golf and get around using only a cane, for the most part. I belive plasma exchange can be a significant treatment for a subset of the MS population. I credit it for saving my life. I have never used a port for the exchange and the tech uses IVs in both arms for blood draw and return. My plasma is exchanged with saline and albumin. I also inject with Copaxone, but if forced to chose one treatment over the other I would stick with the plasma exchange. I give myself b-12 injections every other day, take lipoic acid, and a pituitary gland supplement to stimulate HGH production. 
  • My wife Deb went through plasma exchange, as none of the other MS drugs, including Tysabri (the last one which she had BAD reactions to) worked. Originally the doc admitted her to the hospital in for 10 days (her plasma exchange was done every other day and lasted about two hours). When we checked in, she was brought to the radiology lab where a line was placed in her neck. (For her, this was the worst part, sort of like a PICC line). From there she was brought to the critical care unit (CCU) and the plasma exchange was started a couple of hours later. The machine was wheeled into the room by the nurse, Deb was "hooked up" and the process started. The process is painless, according to Deb. The device looked kind of like a dialysis machine. Two days after the second treatment, the doc said we could go home and come back every other day for the treatment. She feels better and  it looks like next month will be treatment #2. Doc says if she stays on this treatment they can put a permanent port in somewhere else.
  • I was diagnosed with MS 12/09. I was almost paralyzed on my left side, with symptoms of nerve pain and muscle spasms. I received 2 Solu-Medrol infusions between December and February. My prior neurologist was baffled as to why this didn't help and started me on Rebif. However, I never remitted from initial onset with standard protocol treatment. I referred myself to an MS specialist March 2010. On the initial visit I was told that I needed to be admitted immediately and start plasma exchange if favorable results were to be achieved. I had a temporary vas-cath placed in the side of my neck with 2 ports (one ingoing/one outgoing) and received plasma exchanges every other day, 5 treatments total. I was hospitalized during this time and monitored closely. The only symptom I had was being extremely tired and weak. The greatest benefit was the exacerbation remitted and the burning pain ceased. I was also able to regain my better mobility. I would go through it again if warranted.

Read more: 

Plasma Exchange (Plasmapheresis) for MS and Other Neurological Diseases​

Q. When is Plasma Exchange Recommended for Multiple Sclerosis Treatment?

Q. What is the treatment for Tysabri-related PML?​

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