Do these infusion treatments actually do anything?

General General GBS Discussion
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I have these infusion treatments every three weeks. This is my second time having them. The first time I did them for six months and I thought maybe they were helping but I am not sure. I stopped for awhile( because of a complicated mess having to do with insurance and my neurologist being affiliated with the hospital I was in when I got sick, and his receptionist being unable to schedule an appointment because her computer wouldn’t let her due to a balance on the hospital bill).

So....I am doing the infusion treatments again and I have it every three weeks. It is really expensive and its not working.. I am not getting any better. The medicaid pays for it now, but I feel kind of guilty costing the government so much money for a treatment that doesn’t seem to be helping me. The only benefit I can see is that I used to catch colds all the time and it took forever to recover from them and now I hardly ever catch colds.

When I first got sick, (or rather, a month later, after several trips to the ER, after being turned away each time, when I was in such bad shape they finally and quite reluctantly admitted to the hospital), they gave me the IVIG in addition to a whole bunch of other medications...and it DID help. However they might have given me a larger amount of it, so maybe that's why it worked. Or maybe one of the other medications worked. Or maybe the disease just ran its course regardless of what they gave me..All I know is after a few days of receiving all that medication in ICU the danger of possibly having to be intubated had passed, and I was able to grasp a cup of water, hold it to my lips, and set it back down without spilling (much) I was moved to a regular room and I made steady progress from that point on. Around six months later, it levelled off and I haven't really gotten any better since then.

Its been four years since I got sick. I have "significant nerve damage" and there has been no change in three and a half years so apparently this infusion treatment isn't helping. How long should I keep hoping before I just give up and accept that this is how my life is going to be?

Does anyone else find that these infusion treatments help them at all?

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Hi QueensGambit.

My son had a really bad gout with GBS last year and received IVIG. I was really intrigued by this because I am immuno-suppressed and have been receiving IVIG treatments monthly for years. I swear by them and was amazed they would use this on him.

Apparently, IVIG treats a lot of conditions. The massive IVIG doses they give you in the hospital when you have GBS are intended only to trigger your own immune system to start rebuilding the myelin covering spinal cord. It either works or it doesn't and how much you recover from the initial bout depends on your body's ability to take over from there.

The monthly doses I receive are much smaller and they are intended to keep my immune system at its best. That is why they do regular blood tests, to make sure my antibodies are at a healthy level. The treatment makes me healthier so I can avoid catching, or effectively fight off, something that will be really serious like pneumonia or even the flu. Like you, I have significantly reduced the number of colds and infections.

I suspect your doctor is treating you with IVIG as a preventative measure so that you will be less likely to get sick, and not as a treatment for GBS. Since GBS only attacks when you are already sick with something else, he probably believes that keeping you as healthy as possible will reduce the risk of another bout with GBS. If you are still having problems from the last round of GBS, then I think you are going to have to do something else to address them, like PT or other drugs to relieve the symptoms.

As far as worrying about a new round of GBS, we too are always concerned it may be coming back in my son. We have had a few trips to the ER when the symptoms seem to come back, and so far every time it has not turned into a second bout of the illness. He even lost the use of his foot recently, but it turned out to be a temporary paralysis due to the old nerve damage, not a new bout of GBS. It is never far from our minds and it is scary.

Hope this helps! Hang in there.

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Hello mdolich. Iam affraid the most of a relaspe. I was told once you have Ivig you can’t get it again. It’s scarey to know you can. After my release from the hospital I haven’t gotten anything. Thanks to the insurance that sucks lol. The doctors here suck

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i fusion of what ??????

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Absolutely they help but they may not work for you. You and your doc have to decide. If not, there are other options to try. Maybe if you were not getting them you would be worse. Talk with your doc and see him in person as he needs to examine you.

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Thank you so much for your replies! Thanks, too, for the information. I guess I was expecting too much from the infusion treatments.. It is validating to hear that there are others out there who understand, and who have experienced what I am going through.

You know....with all the reading and research I have attempted to do, I have gotten precious little in the way of information. Everything I read seems like the same damn thing just said in a slightly different way. They make it sound like ...."GBS is really serious at first, but almost everyone recovers completely in a year or so, and chances are you will too" or something to that effect. At least, that is what I have been able to glean from it.

At first it gave me hope, but it turned out to be false hope. After awhile I began to feel like I must be the only one who is still sick after all this time. Then I started thinking I was being a baby about it, and I should push myself harder. But that turned out to be a really bad idea. When I push myself too hard, I end up setting myself back rather than getting stronger. Thats one of the things I cannot seem to make anyone understand. They think that if I work harder at it, I will build up my strength. While that is true, its a fine line. If I push too hard, I loose ground rather than gaining it. Its not like an injury or something..Its unlike anything I have ever had before.

I am sure most everyone that knows me well and loves me enough to have read a little bit about GBS has read the same information that I read, so they probably think I should be better by now. They assume I AM better now. When I explain (over and over) why I cannot do the things I use to do, or why I am so tired, or remind them that I live with constant pain,or I try to explain why I need a nap when all I did was prepare a meal, clean up, and take out the garbage... I don’t think they really get it. I don’t really look any different....but I am not the same person I was before I got sick.

I don’t really know anyone else who has had this disease personally, just online. But among those who have actually heard of it, it is rumoured there are a few people who know someone whose ex sister in laws college dorm mates second cousin had it and made a complete recovery, and now he works twelve hours a day lifting huge blocks of cement, so its really not that bad after all! Or they knew someone from work twenty years ago whose brother had it and now he is walking on his hands while juggling flaming swords with his feet......So I shouldnt worry. I will be fine! Or their grandmothers neighbours daughters best friends ex husband had it and made a complete recovery. He had it so bad he had to be intubated, spent two weeks in ICU, and before you know it, he was breathing on his own, he was back to work within six months, and now he can recite the periodic table of elements under water, in German, backwards in one breath. (funny, nobody ever remembers the actual NAMES of these extraordinary people, or where they live, ...and I am starting to wonder if they actually exist!)

From the very beginning, from when the symptoms first started, one of the most frustrating things was the fact that nobody believed me. The doctors minimized my symptoms, and I kept getting worse and worse and they kept giving me pain killers and sending me home. I almost died because they refused to admit me to the hospital until I was completely paralysed and in excruciating pain and both my mother and my daughter threatened to sue them if they didn’t do something.

. And now, four years later, I am still sick, and it seems like nobody (except people on here) really understands why I am sick, or even acknowledges that I am sick. I mean....I am supposed to be better now. Right? Everything they read about GBS says so. All the websites say so. All the information out there agrees that most people have a complete recovery within a year or so......So what the hell is wrong with ME. Right? Everyone agrees that I should be better by now. Therefore, I must be. The books say so.

Seriously.....I hope most people DO get better quickly....and I am sorry for the other people who don’t, and who are suffering the same way I am, but I am also glad I am not alone. Its comforting to know that someone understands, and that I am not crazy.

Thank you again for your thoughtful responses to my concerns! It means a lot that you took the time to answer.

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"I even had one doctor (not a neuro) tell me there was no such thing as GBS/CIDP, I found a new doctor, LOL."

That doesn't amaze me!

That reminds me of one doctor in the ER who tried to reassure me by very patiently, (like he was speaking to a small child) explaining to me that anxiety can often cause symptoms that seem real, and he understood that to me, the numbness and pain is very real, but there is nothing wrong with me. All the tests came back negative. So... I shouldn’t worry because it's all in my head, caused by my emotions, or possibly hormones. (I was 48 at the time) and often, women my age experience anxiety.

You are right..... We do need to educate people. I think I know the booklet you are referring to, the one from the GBS foundation, "for family and friends" ? If that’s the one, t was really good! It was the first thing that I read that came close to describing it.