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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Junior Member
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Hi Everyone,
I have read that alot of people mention on here that they go back kinda regularly for Plasmapheresis, like once a month or every so many weeks. My questions are: How often do you go for plasmapheresis and where is the port? What kind of port do you have? My dad is currently in the hospital because he had a crises, and has had plasmapheresis twice inpatient in the ICU. Moving forward we were talking to the docs about that he might need it somewhat regularly, and we were discussing how they could access him (via port). I just wanted to see what others have done. Also, do you go in the hospital for a few days, or is it outpatient on a day to day basis? Lots of questions I know! I hope they all make sense. Strength to all! Dana |
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#2 | |||
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Member
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Hi Dana,
So far I had 3 series of 4 PLEX, one 2 years ago as an in-patient with a femoral port which didn't function well and was removed after the first session. These took place every 2 days and they insert the neddles in my arm veins which, by chance, are very accessible and strong. The other 2 are recent, one late november and the other late december but this time as an out-patient and again without port. My veins are still OK even after 2 year Pred treatment...The sessions are performed at the rate of 2 per week. I just started a different scheme: once per week for 5 weeks, out-patient and no port! The future is probably one session every 10 or 15 days until my 50 mg Pred (or more?) finally kicks in... Maurice. My advise: have your father's arm veins seen by the PLEX staff, maybe he doesn't need any port! |
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#3 | ||
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Member
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Hi Dana,
I had 3 sessions in 6 days as an out patient and they used the viens in my arms. They were only going to put in a port if the viens didn't hold up. Hope this helps. Hugs, Pat Last edited by Pat 110; 01-14-2010 at 01:28 PM. Reason: forgot something |
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#4 | |||
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Member
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Hi Dana,
I've had about 7-PLEX treatments since last Feb.. I haven't needed to get a port. I agree with Pat that I think that they're only required if the veins are weak. If his veins can handle it, I'd opt to not get a port. There's an increased risk of infection, and so you have to be very vigilant in keeping them clean and such. Nicky |
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#5 | ||
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I had plasma exchange once, many years ago. I was inpatient and they did it for 7 days straight, via the veins in my arms.
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#6 | |||
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Member
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I have had my first "round" of PLEX, in the ICU, at that time they had to put in a central line, in my neck.
after that I had about 10 more as an outpatient in the ICU ( I know it sounds funny, but due to the severe response I had to the PLEX, they wanted me under good monitoring). as I was much better then, they could easily do it my arm veins. my next "round" was again when I was not doing so well. they tried using my arm vein, but after the second time they had to put in a femoral line. the first few were done in the ICU, but then in the neurology ward. I never had a port. and if you do need one, it has to be the kind they use for dialysis, as you need high flow for the PLEX. hope this helps, alice |
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#7 | |||
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Junior Member
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I have plasma pharesis at least once a week, although when I first started, in August of 2008, I was having it three times a week. I have a permanent catheter embedded in my chest that goes into my vena cava vein. It exits my body just below my collar bone It's been there since September of 2008 and my understanding is that they can last for years. They tried doing it through the veins in my arm, but it didn't work and was excruciatingly painful. I have the PP every Friday afternoon at the Apharesis unit at a hospital near me. It take about 2.5 hours or so.
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