I'm interested in hearing from any of you who have received Plasma Pheresis for your MG. Is it done inpatient or outpatient? How long does it take? Is it considered risky? What was the recovery time i.e. time away from work? I've had three IVIG treatments and each one was less effective than the last. My Neuro is telling me that the only bullet left in the gun is Plasa Pheresis. Any info. you can provide would be much appreciated.

I had mine done inpatient but that was because I had it during a crisis. They do run it both inpatient and outpatient here. The time it takes depends on your height/weight, mine was about 45 minutes per treatment and I had 5 days of one a day. Another fellow who was in the same area as me had it done for a different condition, but he was 3 hours a pop.

It is "risky" in that it is a blood product (but so is IV IG).

The people who do it outpatient here get early morning/noonhour/afterhours so they can continue to work if they do work while undergoing treatment.

If you're going to get a one-off you'll get a set of stents (two big needles with hose connections about the size of McDonald's straws) put in your neck down to some large arteries in your chest. If you're setup for long term plasmapheresis you'll be setup with a port or shunt in your chest with a semi-permanent connection, kind of like dialysis patients.

Normally they say it takes 3-5 treatments to see results. I saw definite improvement after the first treatment when I had it done.

I haven't had it done in over 17 years but when I did I was inpatient for a week, but then that was long ago. My Dr. wanted it done again now but the hospital that does it in my area is concerned because of infection in the shunt area {I don't have a shunt} but the Dr. is afraid to give me one. Sadly I think I am going to have to go for it because I can't take any medications so plasma exchange is my only option, at least I know it works

Hey there,

I had a cycle of plasmapheresis (not for mg) during a major thrombotic storm about two years ago. The first seven rounds were an inpatient procedure for me as I was in intensive care and it definitely made a huge difference for me, as it was the only thing that stopped the c-aps from killing me. I had one round every two days with constant steroid, heparin and ivig drips in between and after the first seven rounds I was released, had a round of cytoxan a week later and two more rounds of plasmapheresis. I had a central line placed for the whole thing and although that wasn't a pleasant thing to have, it was a blessing to not have nurses and docs trying for hours to find a vein that wasn't sclerosed and/or hiding and that they could use for the actual procedure.

Only problem I had during the whole thing was that I got a bad transfusion reaction from the plasma shortly after the third or fourth session with chills, fever, really low blood pressure and major hemolysis so I got albumin instead of plasma after that.

I think plasma exchange is a last bullet kind of deal for most diseases but it can be incredibly effective, at least in my experience! Hope it goes well for you and that it helps your MG!

Ziggy

Hi there! I have had 3 sets of plasma exchange. It takes about 45 min each time, and I get them for 5 days in a row.

They will want to set up a central line (like Brennan described) - much easier than trying to go in every time.

I have had to stay in the hosp every time, b/c there is always a risk of infection when they are in that area, but that was fine with me, b/c I was tired after the exchange - for ME the IV IG makes me feel soooo much better, but I guess the exchange makes me feel better longer!

If the drs are planning on doing this long term, you may want to consider a port or shunt - that way the can access the line easily.

I have never had a bad reaction to the exchange. EVER!

Hope this helps!
Erin

Hi Martha,

I had three exchanges the week before my thymectomy in 02 as an out patient. They used the viens in my arms, which I wouldn't reccommed unless you have a lot of them. The first one too an hour, the scond one two and the third about two because my viens were blowing left and right. Using smaller needles and viens slows it down. They used 7 or 8 bottles each time. I don't remember the amounts. I was told to eat a large breakfast before. I felt very dizzy after each one, but I think that had a lot to do with how many times they had to stick me and find new viens. When they ran it too fast they had to stick tums in my mouth to replace the calcium that was being depleted. The day before the surgery I started feeling so good and strong. I'm sure that's why I did so well during and after the surgery. The only thing it didn't help was my double vision, but the mestinon took care of that. Hope this helps. Take care.

Hugs,
Pat

Hi, I am currently recieving plasma exchange and have been for 4 months now. Istarted with a run fo 8 days in a row and then continued with 1-2 sessions per week. Fortunately Ihave good veins which I believe is half the battle-makes things a lot easier and process runs smoother. The veins in my arms are used and I only require a peripheral line-those used in IVIG and a fistula to remove the blood. Both these are removed at the end of each session but of course this can be different for everyone. I recieve 2L of plasma based on my height and weight and the mg and normally it can take between 1.5-2 hrs. The only side effects I have experienced have been low calcium levels in which you experience tingling in lips hands feet and cramps and low blood pressure. A calcium supplement normally resolves this or in my case 2 cups of milky hot choc! I have the treatment on an outpatient basis as though my mg is bad at moment I am stable. The decision on where you have it will depend on how bad your mg is. A word of advice if having it on an outpatient basis take any meds at least 2 hours before as the process clears any meds from your blood and if for example your treatment takes one hour take mestinon 3 hours before start of treatment so that you can take a mestinon straight after as I have always felt weaker straight after treatment. The treatment normally takes it out of me for the rest of the day and sometimes the day after. The doctors and nurses will go through this all with you and you won't know how it will effect you until you have it, we all react differently and a nurse will be with you throughout the exchange. As a mother of a 2 year old I actually look forward to it, for me its 2 hours of relaxation with a good book!