Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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limpnoodle 01/14/2015

After not being able to implant two separate vortex catheters because of occluded neck veins, I will be going back in next week for placement of a dual lumen vortex to replace my current tunneled catheter.
None of my doctors are comfortable with my keeping my tunneled catheter, but I must keep my only remaining vein open for future plasmapheresis. Looks like I will be needing it approximately every eight weeks. Had my last treatment of this round last Wednesday.

I was also able to arrange possibly being able to get my next Rituxan infusions done locally instead of having to travel three hours each way to get them. Just waiting to get approval from insurance at this point.
Looking forward to improved health this year!

Barbel 01/14/2015

Yay for improved health! I know you have really suffered. I am glad to hear some good news from you.

judithwilson 01/14/2015

Good luck and may this be a healthy year for you!

angepugin 01/15/2015

Sorry man and goodluck with the vortex port placement!! I'm in much the same situation as you and have recently had issues with my AV graft we use for exchanges. It isn't a nice place to be and very worrying. Just to say I am with you and certainly looking forward to better days this year!! Get strong!! Hugs Ange xx

snowbeltfolkie 01/23/2015

2014 was not an easy year for you, and I hope that all things change for the better, this year. Hang in there, you are a warrior - Ross

limpnoodle 01/23/2015

Thanks all! The placement went well and was much less painful than the tunneled one. I found out that me and tramadol do not get along. Every time I would get up, I'd get disoriented and started retching. Not fun when you can barely stand up. At first I thought it was the anesthesia, but figured out it was the tramadol, which I found out I didn't really need anyway, since the pain is minimal.

deleted_user 01/23/2015

Hi there so glad all went well with the placement!!! Sorry for getting sick from the tramadol.....We never know what will bother us so its hard but so glad your ok and heres to good health from now on in 2015!! So glad all is well!! Hugs Jacki

txkiki53 01/23/2015

Good to hear the port was placed, here's to better days.
Annette

tam444 01/24/2015

I'm so glad things are looking up for you! Here's to a much better 2015!

Tamara

snowbeltfolkie 01/24/2015

Thinking of you and wishing you the best!
With me, the plasmapheresis was used first, quite heavily. Then the Rituxan was used, which took a good 6-months to really take hold (Two rounds of Rituxan).
A question occurs to me, for which I don't have an answer.
If Plasmapheresis is given, after a dose or doses of Rituxan?
Does the Plasmapheresis also remove the Rituxan?
Anybody know? - Ross

limpnoodle 01/24/2015

I don't know the answer to that, but my experience is that the plasmapheresis is more effective and long lasting for me when Rituxan has done its job of removing the antibody producing B cells.
It will halt production of the antibodies, but won't deal with the ones you already have, so I am going to try, if possible, to have another plasmapheresis immediately before the rituxan.
My Rituxan kicked in right away, but did not last long, two and a half to three months. My thinking is that if I have a clean slate, so to speak, it may last longer.

txkiki53 01/25/2015

When I was getting Rituxian (had to stop as I now also have a lung disease) the doctors had me get it right after plex.

Good luck
Annette

limpnoodle 01/26/2015

Thanks for that, Annette! So my thinking is reasonably accurate according to your doctors.
When I first had Rituxan, it had been a couple of months since my last plasmapheresis, and I was in quite poor shape.
Before Rituxan, I needed plasmaphersis much more often, as much as three times a week.
After Rituxan, I can go eight to ten weeks between rounds. I am hoping to stretch that out even more by carefully planning when I get it. Gives me that light at the end of the tunnel.

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