To all and hope for your experience with this.
I just came home from the Hospital, after my first crises. I thought they were going to kill me with IVIG.
I wound up having Plasmapheresis done. It was great. Even after 1 treatment, I felt really good.
I had 4 treatments in a week, and came home today.
The main question I have, is did I miss this in the group discussion or has anyone talked of it.
Please give me your experience with this, as I would like to understand others opinion of this treatment.

FREDH

Hi Fredh,
I'm on plasmapheresis since 2010, Cellcept didn't work, neither IVIG. Thanks to Plex, I was able to gradually reduce my Pred intake. I was having one plex every two weeks, then 3 weeks then each month until now every two months with Pred 6 mg/day and 5x60 mg Mestinon per day. I'm hesitating between tapering towards 5 mg/d with one plex every 2 months or staying at 6 mg/d and trying one plex every 3 months perhaps starting with one plex every 2.5 months...
I'm happy with my neuro who lets me ajust my treatment at my convenience.
She knows me since 2007 and accepts my suggestions.
I have an almost normal life for at least 4 weeks gradually deteriorating until the next plex.
Although plex is not commun for a long term treatment, I found it very effective. Don't hesitate to contemplate that scheme if possible for you.
Maurice.

Thanks Maurice,
You sound like you are doing this on and outpatient basis. Did you have to have a permanent port installed? It sounds as if it only last 4 weeks. I hope to get longer results. If you have a permanent port, Is it a big problem to maintain. They do not offer a lot of outpatient in San Antonio, Tx.
Thanks again FREDH

Originaly for my first round of 5 Plex, I was an in patient and they installed a femoral port but I didn't work well and the staff conducting the exchange noticed that I had very good sound veins in the elbow so they decided to skip the port and work directly through the elbow veins and that procedure remained unchanged until now. They even told me that my veins were a nurse dream...
As an out patient, the whole process takes a little more than 2 hr, 15 min preparation, 90 minutes for 4 liters of plasma, 15 minutes rinse+bandage and 15 minutes rest.
I arrive at the hospital usually at 9:00 AM and I drive home at 11:30 AM.
If you have a chance, ask the people to look at your veins and about running the exchange without a port...?
Good luck to you,
Maurice.