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Old 08-14-2016, 02:00 PM #1
dl4plans dl4plans is offline
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Default Plasmaphoerisis, Ivig?

not sure if I have the spelling of these 2 treatments correctly but does anyone have any experience with these treatments?
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Old 08-14-2016, 02:15 PM #2
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Old 08-14-2016, 04:14 PM #3
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Hi dl4plans,

I have had IVIG, but I have not had plasmapheresis before. Is there anything in particular you need to know? For me, IVIG has been quite helpful. Initially, I received it a number of times in the hospital when I had exacerbations of my symptoms that were quite bad. I had five days of treatment. I am receiving IVIG now, two days in a row every two weeks, on an outpatient basis.

Everyone is different. I have heard some people get IVIG and experience no side effects with the treatment. I do get side effects, and I think that happens pretty often for patients. I take medication before they give the immunoglobulin. I take tylenol, zofran (an anti-nausea medication), and also Maxalt (an anti-migraine medication, because unfortunately it also gives me a migraine). It is also common to give Benadryl with infusions, and sometimes a steroid medication like prednisone. These can lessen the chance of a reaction to the IVIG. If you will be receiving it, you can also help yourself by drinking water and being well hydrated the day before your treatment, and trying to drink the day you get the treatment if you can as well. If you start experiencing symptoms while you are getting the infusion, ask the nurses to slow down the rate of the infusion or even stop it for a few minutes. This can really help a lot. If they slow down the rate of the IV, it can make the side effects more manageable or even go away.

I hope this answers some of your questions. If you have other questions, feel free to ask. Maybe somebody else will be able to answer your questions about plasmapheresis.

Take care,
Erin
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Old 08-14-2016, 04:32 PM #4
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Quote:
Originally Posted by dl4plans View Post
not sure if I have the spelling of these 2 treatments correctly but does anyone have any experience with these treatments?
Yes I have, when I was first admited when I had my crisis in April of 2015 IVIG was my first treatment, I was infused for 3 consecutive days which if I remember right took around 8 hours each day, I was in really bad shape their main concern was my breathing, my lungs we're really affected and could barely speak nor swallow so they said that IVIG was the quickest and easiest to try to get me stable as quickly as possible compared to PLASMAPHERIES which is a more complicated procedure...

Click on link bellow;
Plasmapheresis | Definition & Patient Education

Last edited by Snoel; 08-14-2016 at 05:50 PM. Reason: add info
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Old 08-15-2016, 09:59 AM #5
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Quote:
Originally Posted by Snoel View Post
Yes I have, when I was first admited when I had my crisis in April of 2015 IVIG was my first treatment, I was infused for 3 consecutive days which if I remember right took around 8 hours each day, I was in really bad shape their main concern was my breathing, my lungs we're really affected and could barely speak nor swallow so they said that IVIG was the quickest and easiest to try to get me stable as quickly as possible compared to PLASMAPHERIES which is a more complicated procedure...

Click on link bellow;
Plasmapheresis | Definition & Patient Education
I have had both treatments. I had a crisis in Oct 2015 and again this year in Jan 2016. I had IVIG Oct and it did not help. Also made me feel really bad. The doctor talked me into Plasmaphersis and I was much better after just 1 treatment (5 are recommended ). I also had some out patient treatments in Dec 2015. They did not seam as good. I went back to the Hospital in Jan 2016, and got the full 5 treatments.
I have ben much better since, although all my medicines were increased also. Hope this helps. Good luck
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Old 08-15-2016, 02:36 PM #6
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Hi, Why you took IVIG? SFN anybody?
How many treatment it took so you feel better?
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Old 08-15-2016, 06:06 PM #7
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not sure if I have the spelling of these 2 treatments correctly but does anyone have any experience with these treatments?
has anyone had these treatments Pre-surgery for Thymoma?
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Old 08-15-2016, 08:26 PM #8
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I'm still doing a weekly plasmaphereseis every Wednesday it's going to be my 73rd...on the 6th day I'm starting to have difficulty speaking very slurry and numbness in face, lips and tongue and my taste buds get affected, my food doesn't taste the same, a few hours after my exchange I'm already starting to feel better and after a good nights sleep I'm back on top of things...at one time I was doing back to back Plasma exchange and IVIG and wasn't really worth it, it took 7 hours so I only do Plasma exchange and works wonders for me so far and I'm very lucky to be able to use my arms veins...
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Old 08-15-2016, 08:30 PM #9
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I've had both. Ivig didn't help and second time I had it, I got aseptic meningitis. Plasmapheresis helped a lot.

I have had many, many periodic series of treatments, but do best with a regular schedule. I now get one treatment every other week.

With Ivig you can usually just get it in a vein. If you have really good veins, you can get plasmapheresis through the large veins in the crook of the elbow, one needle in each arm, but you have to lay very still during the treatment. One draws the blood out and the other returns it. My veins are too mushy and collapse, so I have to have a dual port.
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