hi dahlek
Just wondered about IVIg and any info, good or bad.
thanks

IVIG stands for Intravenous Immuno Globulin. It is a filtered blood product used primarily for autoimmune conditions. It is extremely expensive due the screening processes and processing for the product. It is tightly regulated.
It is administered thru IV in a liquid form into a vein, usually doses are geared according to your weight and condition. IVIG is used to treat several neuropahties, GBS, CIDP, MG, ITP, MMN and has been experimental in treating ALS, MS and over a dozen other medical conditions.
There are side effects to this treatment tho, some effects can, like many medications, become life threatening. I receive treatment monthly[2+ years] as I could not tolerate other therapies. Others may receive it weekly, bi-weekly, bi-monthly or on intermittent schedules- depending on a person's response to treatments.
Many side effects can be unpleasant, but others I know of who receive this treatment who do not react adversely, wouldn't trade it for the world.
There is a new magazine out, called IGLiving, which is informative and also provides articles and references to web sites that help understand the product, it's effects, regulations and uses.
For me, infusions on a regular basis, have slowed the progression of my neuropathy and it has lowered the pain levels to something tolerable [5+/-] and I'm able to function fairly well [limited walking, driving, etc]. I don't know where I'd be without it, honestly-it's not an issue I want to consider. I am grateful I can have it. Web it up and read all possible about it if you are considering this treatment. Many of the brands of IVIG have prescribing info that clearly outlines the benefits and risks of treatment-
Teri, are you considering IVIG or are you receiving treatments and have questions? If you're just getting started, having a bit of background helps to form questions, there should be a LOT of them! Start with the NIH and use their search for IVIG...there's lots there for starters. Hope this all helps - j

Thanks for the help Dahlek

Where is Kmeb? She is having IVIG right now. Does anyone know how to email her and get her to post on this one?

Billye

Hi Silverlady, Dahlek, Teri,

I'm feeling gullty - have actually been reading the site qute a bit - but just havent signed up - so here I am!

I am still having IVIG - we've changed it to every other week, infusion done at home - and I do notice a difference - I've got lots more mental energy (and my feet buzz like crazy the first few days which after being "dead" for years is very strange) - which is motivating me to try to do more around the house then just rest - even a few hobbies I can do that dont require much physical exertion (like making easy jewelry) - it kinda "jump starts" my brain if that makes sense! I've been sick for so long - I think my body is going to take a while to catch up - but I definately notice an improvement in balance - which is great....

I'm still dealing with autonomic issues and lumbar spine stuff and fibroids that we have to get under control - but I have I feeling when these are addressed I'll feel much better....

The infusions do have side affects - and the first day or so after is rather tough - but overall I feel lucky to be able to have the treatments.......

Silverlady - I know you are going to Mayo - thats awesome! I've actually been talking to Mayo AZ - and may go there in the near future too! Cant wait to hear how you do there!

Take Care.
KMEB

yes, you feel like you've a bout of flu at first: headaches [this can be fixed w/pre-meds and slo infusion rates], the runs, and a lack or attack of appetite. It doesn't last long at all 2 days +/-. I'm infused 2 days a month, and 1/2 way thru the 1st day's infusion my brain feels like I've had 3 double-expressos [which I havn't had], inspite of a whopping Benedryl dose that SHOULD knock out an elephant!

My overall nerve pain drops 2-3 points and my aches 'n pains level goes down as well. Overall, it means I can pretend in a way to have a LIFE! A very useful thing in my book! In a way, it's simpler and more straightforward than lots of meds - my only complaint is I need to get it every month. Some folks are lucky and don't - hope this helps - j

Kmeb,
So good to "see" you. You had me worried. Don't lurk, you've got a lot to contribute. There are some new people here.
Billye

i had an ivig treatment given to me by the icu doc, without permission of my neurologist doc, he got soo mad, said i had a chance of aquiring human equivilant of "mad cow", anytime in the rest of my life, kind of scary!

I believe the chances of 'mad cow' are about .002% or less these days. Blood Donors are seriously, regularly and rigorously screened before even starting to 'fractionalize' the blood into it's various components for use by many with hundreds of immune diseases.

The 'mad cow' incidents occurred in the late '90's and every single IG provider has changed their processes for these products since then. It is more regulated than many top class powerful drugs. The mad cow thing comes up more often than necessary because it's dramatic! Nothing more.
The IG Living magazine discusses manufacturing of IVIG and other products Starting on Page 24 of their Feb/Mar issue. You'd have to sign up to read it? But it's free and you don't get extra junk mail. https://secure.igliving.com/web_page...e_archive.aspx

I think you missed the points many of us were trying to make about receiving IVIG. But first? I have to ask.....if you needed blood transfusions during a surgery or trauma? WOULD YOU WORRY? Would you care, even, at that point? I'm sorry to sound harsh about this, But I read everything published on IG products before I decidied to 'go' with it. Since I have THREE immune issues, this stuff is keeping me going! As for Mad COW? Some folks think I'm already crazy! For me, steroids were out and plasmapheresis is far more risky.

I have to say that my quality of life is vastly better as a result of receiving IVIG. I've been receiving it for over 5 years and I am still mobile and in far less pain and immunologic danger due to it! As for the regulations? Read all about it:
http://www.fda.gov/Cber/blood.htm Explore this site and you will appreciate how the US and IG provider companies are working towards safer products. Somewhere, not sure where tho...I got the impression that Canada's scrutiny of such products was even stricter!

In my own case, with a hyper-immune CIDP issue IG has really kept me from becoming bed-bound and worse. We all fight our pain and cope in different ways....this helps me immensly! For folks who are immune deficient? They would not be alive today without it. Especially the children!

's - j

PS as for mad cow? Golly that doc is about 10 years outta date!
Also, have to ask? WHY did the ICU doc give you the IVIG? Must've been a VERY good reason, as the stuff is NOT cheap!

it was the start of 1996, after plasmaphereisis, and steroids, neurologist was away at that time.i had gone from healthy one day, to totally paralysed and put on life support, in just 6 days, and had never heard of guillain-barre before that. so after i was taken to get the trach put in, i was taken to i.c.u, and thats when the ivig was given to me, not like i remember much those 6 weeks in the i.c.u, except for the awful pain.i was not expected to live, i had just turned 36, and the mother of 3 daughters.it changed my entire life.i do not worry about mad cow, should not have mentioned it, but i think we should always know everything about any treatments, procedures that we get.i am so sorry you have so much on your plate, and glad that the treatments you get can help you. once again, sorry i said anything.