Therapeutic Plasmapheresis

Evening all,
I have been on 3 of the DMD's and reacted badly to all. Usually these days my neuro orders 3 days IV solumedrol at home now to calm my flare down. The last time, the solumedrol didnt work so I was admitted for 10 days and had plasmapheresis. I was wondering if anyone has had this. Outcomes? Opinions or knowledge on this treatment? I was to get admitted again last week for another round, but, the first time was no picnic. You go into the OR and have a cath put into your chest so a major artery near the heart can be accessed, and after about day 4 it is uncomfortable. I'm running out of options with all my adverse reactions and since April of this year have had relapses every other month. Been "ok" sort of, since early September. Keeping my fingers crossed and prayers said for a break for like a year!
Thank you so much, I'm finding such great info on this site since finding it.
Catherine

[Lulu54]

Catherine,

I'm thinking real hard here and can't come up with the name of perhaps one person who has had plasmapheresis.  There was someone, and hopefully she will speak up.  In the meantime, I'm sure we can learn a lot from you about this procedure.

good luck and here's hoping the break is coming for you.  Lulu

[summerluvr]

I had plasmapherisis.  But, I don't have MS I have Multiple Myeloma (plasma cell cancer).  I had it once for stem cell collection for my stem cell transplant, and they were going to do it one other time when I had such a high protein load in my blood (too many plasma cells) because my blood was too thick and not making it to my nerves (why I started posting on this forum before they finally figured it out).  I haven't heard it for MS though!  When I was hooked up to the machine couldn't eat or drink anything so after 6 hours they unhooked me and when I stood up my blood pressure was very very low I had to lay back down and get hydration.

Not sure about the line they use, I had a central hickman line already for chemo so they used veins in my arm and insterted two really large IV type needles, which they removed after the plasmapherisis was done.  For me The plasmapherisis made me feel much better because I had really intense bone pains from the drugs I was on to stimulate the stem cell production.  As pe the central line, It was somewhat painful to insert and annoying because my skin had a reaction to all the glue and tape,  and then annoying becaue you can't get it wet, and annoying trying to put clothes on but I got used to it after a while

[jensequitur]

Catherine, have you talked to your doctor about Gilenya?  It's an oral DMD that's given to patients who can't tolerate other options.

[Leah_Butterfield]

Hi, my dtr has MS and I have been doing research for years about this and have found some unbelieveable information. I am pasting a link I think you should look at. Also look at the Vanderbilt Protocol by Stratton which is currently being used. Your flares are too often and you are immune suppressed which leaves you open to more opportunistic infections......you need help ASAP. You can blog with me through the
cpnhelp.org site. Leah Butterfield