IVIG vs Plasma?
AnonymousNovember 27, 2009 at 1:33 pm
IVIG is made up of plasma donations from donors all across the country. With IVIG you are putting other people’s antibodies into your body.
Plasmapheresis is a process where your plasma is removed, cleaned & then put back into your body.
So, yes there is a difference.
AnonymousNovember 29, 2009 at 10:12 pm
Not to take over the thread, but to add more specific questions on PE..
Can you get a port?
I know a lot of people doing IVIG get ports, but I’ve not heard many people doing PE.. so IDK if they even recommend placement of them for the procedure?
Also, if you are against recieving blood products is PE or steroids pretty much your only way then?
AnonymousNovember 30, 2009 at 8:05 pm
The PE nurse said think of PE as sergically removing the bad protiens from your body and IVIG is installed as a distraction for the bad antibodies. I have only had PE. IVIG is a cocktail of the plasma from 20,000 healthy donors and with PE the stuff they put in you is highly sterile human albumin. also some places have PE as an out patient but here in Vegas it is only done as an inpatient. IVIG is out patient I believe and correct me if I am wrong, it can be done at either at an infusion center or a nurse can come to your house. PE takes about one hour and IVIG takes about 6 hours I think.
AnonymousNovember 30, 2009 at 9:06 pm
Actually, the amount of time of an IVIG infusion varies by person. It is calculated by the patients weight & volume of the IVIG. There is no set infusion rate. Some people need to go slower than the recommended speed while others can go faster.
I Googled IVIG for you. The link contains many other links for you to research:
I Googled plasmapheresis for you as well & I found this text:
“Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids. Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure.”
At this link: [url]http://www.mda.org/publications/fa-plasmaph.html[/url]
Hope that helps,
AnonymousNovember 30, 2009 at 10:07 pm
Tara- How are you responding to PE treatment?
Is it effective for you?
Any nasty side effects?
I’ve heard PE can take 3 hours.
And since IVIG is based on body weight it would depend.(believes its on mg/kg/ )
I also looked up PE on youtube, and saw people with PICC lines and other lines that were outside their bodies, not inside.
But then they had 2 accesses.
AnonymousDecember 1, 2009 at 2:58 am
I have only done it in two 5 treatment intertervals. the first one 7 years ago worked beautifully the symptoms went away for a year after only 5 treatments 10 days. the second one recently its hard to tell. what happens is that when I fall out of remission it hits me so hard and so fast that I cant tell weather its going take my whole body like it did the first time or stop at my legs like it has other times. so I run to the ER when this happens and the doctors knowing my history and seeing my ataxic gait have no other choice but to follow protocal and that is to admit me and start treatment immediately. this last time it reversed almost immediately from only going as far as my thighs but now I have a mild back and forth kind of thing going. so I think I would need some sort of maintainance treatment these days. but I can wiggle my toes now so I guess its pretty good. Once they get the machine set up the treatment itself is very quik. they can slow it down when you get woozy or need some calcium citrate added but really it only took 1 hour. these nurses are in a hurry though because they get paid for the whole day no matter how long they work so I told one guy he needed to slow down because he wanted to be in and out way too quik for my bodies tolerance.
AnonymousDecember 1, 2009 at 8:49 pm
Thanks for the info all… just to follow up, I saw the doc today and he definitely doesn’t want to go either route for me. I’m a little discouraged, but I’m not sure if I’m just being impatient. He’s increasing me from 30mg to 40mg of prednisone, and increasing the gabapentin for the pain, up to 1800mg per day now.
This past month has been by far the worst since the onset of symptoms back in June. I’ve stopped exercising because it floors me for the next day or two. After going up and down the stairs a few times I’m spent. The doc thought the fatigue and weakness is more due to the prednisone than the cidp. I don’t know though. If you’ve had any experiences like that with prednisone please share.
December 6, 2009 at 1:13 pm
I’ve been on PE off and on for over 12 years now and it has proven to be the most responsive of all the treatments I’ve had over the years (dx 96).
Initially I was using ports for the treatments, but infections on five of them in less than four years put an end to PE that way.
I now get my PE treatmnets with needles in both arms for the past five years, with no problems. Currently, they do a three liter albumin exchange which takes just under two hours.
For the past year I have a PE every three weeks with 500 mgs IV solumedrol, then the following day I get 100 grams of Gamunex(IVIG Brand specific). After years of continued slow decline, this protocal has stabilized me.
Stay after your doc if the prednisone isn’t doing it for you. Good luck.
AnonymousDecember 6, 2009 at 4:02 pm
Buck – Honestly, 40 mg of prednisone is barely treating you. Emily was 35 lbs & I was told the most prednisone she could take daily was 40 mg’s. I started tappering her off of them at 20 mg’s a day because they were making her worse.
Your dr isn’t doing you any justice. If he wants to keep you on steroids then you need to take more. If you are getting worse then what you are doing now IS NOT WORKING and something else needs to be added.
If I were you, I would start searching for a dr who knows more about CIDP. Or one that is, at the very least, up to date on treatment methods. It seems cruel to me for him to keep you on steroids. They come with SO many side effects & obviously they are not working for you as you are experiencing more symptoms.
Take a look at posts from people who were in the same position you are in. They searched & searched for diagnosis or a dr & when they finally starting getting the RIGHT treatment, they could live their lives again. I want that for you. I want that for everyone here!
I’m not going to say what the right treatment for you is (although I’m not a fan of steroids, I know they do help some), but you need SOMETHING MORE!
I hope you know that this post is coming from a caring place. I’m not trying to be mean. I just want you to feel better.
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