IVIG vs. PP
AnonymousNovember 17, 2006 at 12:38 pm
My friend was quickly diagnosed with GBS and within 2 days was on IVIG. She was paralyzed from the neck down, never on a ventilator and is still in rehab. She does not have feeling in her hands and feet and is very challenged with her daily dependencies. She is making progress every day- and she works her butt off. Yes, she is careful of fatigue but tries so hard to do things by herself. She knows her limitations but gets apprehensive in asking her mom to do too much. Her mom asks a million questions like, why do you want that, why do you need this… and that tires her more than trying to do for herself.
Yesterday, she talked to a gal that is recovering from GBS who was treated with the plasma. The gal was paralyzed – face and all – and within three weeks she is painting her nails and is able to dial a phone. My friend’s hands are still numb and she is feeling very sad. She is glad she talked to this gal, they were able to share the special language of GBS, but she is wondering if there is a reason that one treatment gets chosen over the other.
I have been reading your stories and am so encouraged by your strength, courage and helpfulness to one another. I appreciate your input so I can relay the info to my friend. I’ve told her about this site and when she can type or use her hands a bit better I’m sure you’ll meet her.
AnonymousNovember 17, 2006 at 4:09 pm
It’s nice of you to look out for your friend 🙂
I “think” IVIG is usually given first because it is considered less invasive and safer. I was given only IVIG and never had PP though. Did they give her a large course of IVIG over 5 days?? or just a one day infusion?
AnonymousNovember 17, 2006 at 4:28 pm
Nate was never given any IVIG. His Neuro said he would have trouble getting enough of it for some reason.
He did 12 hrs of Plasma Pheresis instead.
He said that would be faster than trying to get enough IVIG.
Nate was so sick that we didn’t have time to get any other opininons but I wish we had.
Since then we have been told by numerous sources that Nate might have recovered faster with IVIG.
He is now 11 mos out and is still partially paralyzed, legs and feet.
I don’t know if getting IVIG now would help or not.
I still have a lingering feeling that he should have had it early on.
AnonymousNovember 17, 2006 at 6:41 pm
I was never given the option of IVig, only plasma. Was paralyzed top of head to tip of toes ….. but after i started moving again my progress was steady and took a few months to be able to walk ‘properly’ again. I doubt very much one is better than the other, as Jer said, I think plasmaph. is more invasive. I’m certain it depends on damage done to the body by GBS, what variant a person had, as well as how the body reacts to what is given. There are so many factors to take into consideration, and of course, everybody is different and each person reacts differently to different medications.
AnonymousNovember 17, 2006 at 6:59 pm
Yesterday was my first day on this site..I had tears I could not hold back when I came upon it by accident. A year ago I came down with a sever case of GBS and had both kinds of treatment and still took a relaps. I can only say that the Dr.’s I had (which was several) was very aggressive with the lung meds and kept me off of a ventalater sp? MY face and whole body but the lungs were affected and I’m still with some paralisis. I hope your friend will keep up her rehab. and specially rehab in the pool. My husband was by my side through the whole time. Tell your friend that Mothers only want to help but sometimes don’t know how to. My spouse took special training to help me and still made mistakes. My hardest lesson was to learn to slow down not just my body but my heart and thinking too. Concentrate on love and blessings when dealing with others this is a long time recovery type of illness and you may need help later,;) remember that each one of us must truely be unique and special to be one out of 100,000….love, Peeps
AnonymousNovember 18, 2006 at 12:08 am
I think there are just so many variables involved with this illness, that no two people can be compared. Many prefer IVIG to PP, just because all that is needed is to have an IV put in, as opposed to a catheter installed (my first one was in the groin area.) But the main purpose of both is to simply arrest the destruction of the nerves by the antibodies in the immune system. Before these treatments were even around (not all that long ago), most people still made good recoveries from GBS. Some people, even with the most severe cases, make full recoveries, while others with “milder” cases never make full recoveries.
I do not believe that it is all attitude (who isn’t trying their best to recover,) or how hard one tries… instead I think this illness runs its course differently in every person’s body. Age & previous health might make a difference, but so many have posted here that were in prime health, yet they did not make the best recoveries. Everyone needs to do the best they can with what they are dealt & left with, & quit beating themselves up because someone else recovered better than they did. I would love to walk without AFOs & a cane at my age & have the full use of my hands back, but after 4 1/2 year I know that isn’t going to happen.
Did I try hard enough? I believe that when my neuro, who is a world-reknowned specialist still tells me he still doesn’t know how I am able to walk (not enough nerves functioning); that I did try hard enough. He also said my hands were too damaged to ever get the use of them back, yet I can do almost everything I need to do with them. I also believe I kept a good attitude for the 3 years I was in a power chair, but we all don’t make the great recovery that the books tell us we should…
AnonymousNovember 18, 2006 at 1:35 am
I agree it is rather invasive but our doctor only gave us that option and Nate was going downhill fast.
When they did PP to Nate, they put one line in his left arm and another in his neck, in the Jugular vein.
He was very uncomfortable with it there but it held ok with a ton of tape and clear bandage.
They took the blood out with one site, and put it back in with the other site.
He was always very nervous when they had him hooked up to the machine with all the tubing, so they started sedating him some while it was going on.
He got Staph infection at the site though and it went into his bloodstream. He got sick from that, needing strong antibiotics.
He really didn’t need anything else to happen.
AnonymousNovember 18, 2006 at 4:36 am
it is interesting to read about ivig in the US in particular especially regarding costs etc. I was treated in a public hospital in a country town. In Aus we have free health care as well as private health insurance where you can choose which hopital, doctor etc. Even though i have private health ins we live in a small town so went to the local hospital. They then transferred me to the next town, also to a public hospital. IVIG was the only treatment mentioned. I have heard stories about doctors refusing IVIG for cost reasons but i never had this problem, despite being in the public health system. (my 4 weeks in ICU cost $35000 just for the bed i was told!) I was in a coma for 5 days while they gave me IVIG. It obviously worked as recovery began once i was conscious. I was on a ventilator, had a central line, catheter, NG tube so whether one is more invasive really wasnt an issue for me!
Like other people have said, recovery varies so dramatically from person to person it is hard to say if the type of treatment makes any difference. You have to avoid comparing one persons recovery to another … i was also totally paralysed including my face and was walking in 5 weeks, totally unaided in 7. I often feel guilty reading other peoples stories – why was i the lucky one to have such a good recovery when others suffer such a long and bumpy road to recovery. I dont think there were any factors in my pre gbs life that helped me or made my odds any better – i beleive that my rapid onset / severe case / MF variant were factors but that is just my opinion from reading other peoples stories.
AnonymousNovember 18, 2006 at 2:08 pm
Thank you one and all for your insight and for sharing your experiences. My friend expressed such a sign of understanding and a kind of relief. She really didn’t like feeling uncertain about the treatment she was given. Your feedback has helped her realize that she shouldn’t dwell on the treatment but continue to focus on her recovery. We have said all along that she is writing her own history. So this chapter is about putting her energy into her recovery and rehab.
Thank you so much for taking the time to share and respond. This site lends comfort to the ends of the globe…and it’s because of you. I really appreciate your words of enlightenment!
AnonymousNovember 18, 2006 at 2:58 pm
It sounds like the IVIG is working, hopefully they will continue her on that every 2 weeks or less. Stopping the attack is key at this point so she can begin to recover. Keep coming back and asking questions, keep us posted on her progress too. Sending my best to you both.
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