IVIg
 

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

Starting homework on IVIG....
 

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

There is more info.
 

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 - I'm Here
 

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
:)

I agree w/KMEB about the buzz!
 

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

Ivig
 

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

ivig-ticking time bomb
 

:confused::eek::eek: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!

According to the FDA?
 

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!

:hug:'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!

ivig-ticking time bomb
 

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.

It was NOT my intent to be 'dramatic'...just factual?
 

Your situation was far worse and you were lucky to get the IVIG.
And, yes we should be better informed about what we are being treated with! It is really up to US, ourselves to be our own advocates about the aftermaths of medications and therapies. Unfortunately, at times, such as yours, you aren't in a situation to get or become informed!
My own situation was what was called a sub-acute onset...in that it was 5 weeks from the time I got numb toes to being admitted into the hospital [where they really did nothing].All the hospital docs could surmise was that something was 'going on' and it took a few 'second opinions' [over a year of doing] and heaps of tests, MRI's and nerve conduction studies, not to mention that old 'spinal tap' to get diagnosed and IVIG. I too, was healthy one day and a few weeks later needed help getting out of any chair! Not to mention bed or other places. The pain meds helped some, but also knocked me out to the point where I was sleeping 18 hours a day.
I understand that the 'system' in Canada is a bit harder to navigate at times than in the US. I also understand your frustrations! Because during the times I was getting other opinions, things were really getting worse. At that time? I was not at all internet wise, either. Not many 'books' out on the subject, you know?
Can we declare peace and share info instead? Having such a chronic disease is really a mess-up to any life you thought you would have. But, it proves your mettle and that you are a far stronger person than you realize.
:hug:'s - j
My onset followed a long bout of pneumonia w/3 courses of anti biotics... stuff started less than 2 months after.

Yes,dahlek,lets be friends, with illnesses like ours, who needs enemies!? I feel really bad for you, that it took soo long to figure out what was wrong with you, that would have had to have been so emotionally draining! And yes, those awful spinal taps! Yuck, I wanted to cry like a little girl, did you get the banging,throbbing,puking,disgusting headache after? Did you have to go thru all of it alone, or did you have a strong support system? I have had many sad things happen in my life, but I am strong enough to survive, if you ever need to let it fly, pick me, I will be here for you! Hugs from the prairies.

Re: IVIG - PrarieMary
 

Havent been on the site in months cause been very sick with autonomic complications of my PN - however, just trying to catch up....

PrairieMary - yes, the IVIG is a life saver for GBS - and is usually used in treatment as a lifesaver - CIDP, etc... is not as life threatening and usually requires constant proof of need, imrovement, etc....

I am no longer getting IVIG - long term it proved useless to me unforutanely, and I'm becoming increasingly disabled... but it works for many (my diagnosis has changed to genetic PN also)

Being a fellow Canuck just displaced - I've found all my relatives get very good care up there! sometimes you just have to wait for non-emergent doc appts. - but you do get good care... In fact, if I still needed the IVIG I couldnt get it due to budget cuts etc. and would have to do without.. there are unfortunately many folks in this situation right now in this country.... It depends on your insurance etc....

Hang in there :)

Yes,kmeb,you are so right about the healthcare we canadians have, though many,many people complain about it.I had no problems at either of the Hospitals I was in, then when my daughter got cancer 7 years ago, she got excellant care, at all 3 Hospitals, and when she spent her final days at pallative care, she was treated with love and much respect, as were our family. Some have said she got such greaty care because she was just a child, but I beg to differ, she got great care because her caregivers cared.It was such a horrible time for me, but every nurse and doctor made it so much easier for us, I wish everyone could get such great care.

I receive IVIG and hope that I can stay on it. It has made a difference for me. I have read that they 'wash' it and that is is very unlikely to have mad cow. (Now this is assuming you trust what our government tells us, and I admit, I have my qualms).

Transmissible Spongiform Encephalopathy prions have been found in aquifers. We created a huge mess with feeding cattle to cattle and now it is in the natural cycle. Chronic Wasting Disease of deer and elk happens to be the most prevalent in animals grazing where cow dung is. I think it is a matter of load...how much of a load of prion you get, not IF you get it. I wonder who among us has no prions from any source, wild meat, cattle, sheep, blood products etc. Our other problem is, you can not 'kill' a prion. First off all it isn't alive, and secondly, it refuses to unbind itself. They have tried freezing, heating, irradiating it and subjecting it to all kinds of loud music, and it will not give up its shape, or mission. I make light of it, but it is a serious problem, and won't get any less serious unless we admit how serious of a problem it is.

I try not to think about it. I have other issues to worry about outliving, besides mad cow.

If you want a brain disease to be concerned about Progressive Multifocal Leukoencephalopathy, PML is more prevalent. It happens when the JC virus which 80% of us carry in our brain, reactivates due to immunosuppressive treatments, mostly TNF blockers such as rituxan, Enbrel or other 'mab' drugs....or the disease AIDS. Lots of TNFs being given out. Chances of PML occuring due to a TNF blocker is greater than Mad Cow in IVIG.

No treatment is without risk. We all have to choose our risk level and take responsibility for what happens. Hopefully, we are all properly informed.

And your doctor was really out of line worrying you to that extent on the Mad Cow. IVIG is very expensive, and the docs have to jump thru hoops to get it for you....perhaps that was his motivation. Gosh i hope not.

Hope you are all well and I would not worry any more.

Thanks about talking about the prions, i agree, just how much, not if! I was given the IVIG 13 years ago, have had many other challenges to over come these past years, do not worry about getting the brain disease-you can not tell if you are getting it, and once diagnosed, nothing can stop it anyway! So I really don't ever give it much of a thought,try to focus on things that I can change.