Therapeutic Plasmapheresis

[Itstime31]

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

[PeninaD]

First Rituximab (yes, 1,000) was about 10 days ago, so she should have another dose by the end of this week.  Again, insurance may be interfering, so I am preparing for another inpatient experience, rather than the luxury of the infusion clinic. When you live more than 2 hours from the hospital, that's a bit of a pain.

[karryon55]

You also mentioned she is on Rituximab. I have RA & MS so I've been on Rituximab for nearly 6 years. I have found it very good but it took about a year for me to really see the benefits & those benefits were huge. I was given it for RA but I will remain on it for MS because I can't really come off it as my RA is pretty bad. I noticed changes at the very beginning with the Rituximab as well & it gave me hope to continue the treatment. I've only just been dx'd with MS but it's believed I probably have had it for 15 plus years. The trails into Rituximab were very promising as well.

Has she had the 1 gram at day one & day fifteen? I just got the impression she only had a single dose. It's usually repeated at 26 weeks which is so convenient as well. I really hope it works for her. I'm over in Australia so I don't have to worry about insurance companies to get my treatments. I get confused at the US system to be honest. Best of luck with all of it.

Take Care,

Karry.

[PeninaD]

BTW, I mentioned her doctor is an MS specialist.  To not besmirch her reputation, before anyone slams her for "why wasn't this child put on something after that first round of PLEX?", our daughter was supposed to go on Gilenya, but our prescription insurance company made sure to botch that up royally.  The kicker?  The day she was readmitted (unable to void, loss of balance and all new lesions from the month prior), was the day the insurance company finally, after a month, put the letter in snail mail to us to say they approved the Gilenya.  
To this date, they still have not informed the doctor of it.

[PeninaD]

Very good question, Karryon55.
Internal Jugular is the protocol at Mount Sinai Hospital (NYC) as per the head of Plasmapheresis/Stem Cell unit.  Next time I see him, I will have this discussion.  We did ask if she could have subclavian (as former paramedics, my hubby and I actually could in some cases place subclavians outside the hospital setting), but never got a real answer to that.

[karryon55]

Hi there, I have not had PLEX but I was interested in reading about what your daughter has gone through.

I was wondering why they insert a central line rather than a PICC line? I used to have PICC lines (Peripherally Inserted central catheter) all the time but I also had central lines if they couldn't get a PICC in place. I now have a Port in my chest for easy access. PICC lines still go to the entrance of the heart but are usually on the upper arm & it's just a longer line. I know if I had a central line the docs couldn't get it out quick enough as it is higher risk versus the PICC line. They are more difficult to manage as well especially when they put a triple lumen on.

The other bonus with PICC lines is you can put a bag over the upper arm & keep it away from the water whereas a central line is more difficult with the bathing process.

I hope your daughter is doing better. It is an awful lot for a teenager to go through. She obviously has a very caring mum to take care of her.

Take Care,

Karry.

[PeninaD]

During the PLEX, she often ran into issues with really low fibrinogen levels.  At the worst, she would end up leaking plasma from fresh needle sticks.  We found that enticing her to concentrate on eating/drinking proteins over carbs really helped her liver have the building blocks to quickly make more fibrinogen and other clotting factors.  The morning blood levels rallied amazingly once we changed her dietary focus, during the PLEX.

Some tricks we came up with to manage your time with the central line (neck) in.

Bring a pack of soft headbands.  Much better for controlling the movement of the long ends sticking up next to your ear than anything the hospital might have (usually roller gauze and tape).

Two or three pillows could be arrange in a way to create a "well", which allowed her to almost comfortably sleep on the side where the catheter was inserted.

DRY SHAMPOO!  Your hair will look better longer while you have to keep the site dry.  Washing up in the normal manner will be problematic, as you seriously do not want to get the insertion site wet or dirty.  Remember, no matter where they put the central line in, the tip of it is right there at your heart, and infection would be a very bad thing to get.

We finally figured out how to put a long/thin bag over the tubes, one twist of tape gathered it around the outside of the bag near the insertion site, then fan our the remainder of the bag to be an apron over the dressings.  Careful showering with a handheld shower head was then possible from the collarbones down.  Once that was completed, we put a chair in front of the bathroom sink, placed a folded up towel on the front edge of the sink, and with her forehead on that, was able to successfully wash her 2 foot long hair.  Have a stack of towels available to wrap the wet hair and drape over the shoulders to keep the site dry.  The nurses were pretty impressed that we got this done.  But then again, they were more used to elderly patients, so just having a teenager on the floor was interesting to them.

[PeninaD]

My 18 year old daughter was almost totally resistant to the repeated rounds of SoluMedrol (5 days each time), so in the last two months, she has been hospitalized twice for PLEX (also called TPE, or Therapeutic Plasma Exchange).  Each time, a Shiley catheter was implanted in her right internal jugular vein (neck), and she received 7 every other day Plasma Exchange.

The first round in October, she had spectacular recovery, but that only lasted for 2.5 weeks. Her doctor is an MS specialist, brought her back for a second set of 7 PLEX sessions early November.  This time it was followed up with Rituximab infusion.  Her balance is still not great, and she has hand tremors.  Hoping that the second Rituximab infusion gets her more on track to graduate HS this year, and get herself in a mind set to get on the college search.

[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

[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.

[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

[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