dr. prescribed ivig but scared of possible stroke, renal failure, asceptic menin...
 

My husband's neurologist put in an order for IVIG for what seems to be CIDP.
His neurologist mentioned that there is a small possibility of a stroke, renal failure, or aseptic meningitis.
Neurologist also reassured that the chances of one of these serious side effect were very rare. All blood work was done and neurologist said everything look fine and to move forward with IVIG.
The decision is up to me and I am scared that my husband may have one of the aforementioned outcomes. Does anyone know of anyone who had one of these adverse complications?
I am so stressed out with worry, I don't know what to do. (also I need to direct my husband in his decision making because he has Alzheimer's (moderate stage.) Thanks for your input

Welcome to neurotalk.
 

And may I humbly suggest coming on over to the Peripheral Neuropathy forum, not only to pick the brains of those who've had IVIg, but to discuss CIDP (symptoms, testing, and the like--there are a number of people there with experience with both):

http://neurotalk.psychcentral.com/forum20.html

This article discusses risks... and what to look out for before starting IVIG..

http://journals.lww.com/neurotodayon..._Raise.11.aspx

It appears that age and platelet elevations are the biggest factors, with carotid narrowing, being another.

People with autoimmune issues, may have inflamed arteries and hence be more prone to stroke anyway.

It is a treatment that must be carefully handled....
 

and how it is administered is as important as what is administered. I have been treated with IVIG for 6+ years and have had only one bad reaction to it..Which I believe was due to an improperly prepared batch. I receive it monthly and it's not a 'drug' per se? It's a blood product -a part of the blood that helps alleve demeyelination of those nerves. I have been treated in the hospital setting [one ususally starts out here or in a doctor's offices], and as I said, have had only one bad reaction. I now have an infusion port put in [this winter] to make it easier to be 'infused'. Right now infusions are at home but, typically the first infusions are done in hospitals due to the possibility of any reaction. This part of the issue you should discuss with your physician and in depth. As your husband has Alzheimers' and that change in environment might be as much or more upsetting as the infusion process itself.
I myself felt some relief from pain after my first 'round' of four days. Now I receive my dose split over two days and it takes about 2-3 hours each day. My having it administered at home is helpful as well, as I have to pre-medicate w/3 benedryl and I'm not worth much after the benedryl other than having a 'hangover' of sorts. I also KNOW how far EMT's are from my house to nearest hospital and I feel perfectly safe with that and my VERY knowledgable infusion nurse!
I agree with glenntaj that you check out the Peripheral Neuropathy forum and I'd encourage you to check out this site: http://www.igliving.com/ And sign up for the 'e-zine' The on line version of their magazine - which is free and you don't get on pesky mailing lists.
I've also found the people there to be amazing in the different ways they can help.... getting information, IG supplies and other problems one mite have with being on IVIG. All the back issues of the magazine are available thru the 'e-zine' and they are useful to check out, but without the bulk of PAPER.
Don't be afraid to ask questions! Of your doctors and of us! Keep faith and take care of yourself along the way! - j

Thank you and and everyone else that replied. I have visited the links that were everyone posted and greatly appreciate the shared knowledge. I am going to go over the the peripheral neuropathy forum as has been suggested.

thanks, going over there now.

Ivig
 

I am not sure what CIDP is the initals for: but my son had Steven Johnsons Syndrome and he recieved IVIG and thank god for that because it helped within 24 hours he almost died, I was scared about the treatment to but it was a chance we had to take , there was a chance that he was going to get better and its something that i had to take a chance on... and he thanked me for taking that chance , do some research on the IVIG yes its scary but sometimes you just have to take the chance... hang in there i wish you all the best. Linda

Hi Joanne,

welcome to neurotalk, it looks as if everyone has done a great job in answering your quesions.
I myself have had IVIG on several occasions for myasthenia gravis, and this a good forum to ask questions about ivig, because alot of us have received it. So if you have any further questions feel free to drop by, we are a friendly lot.
http://neurotalk.psychcentral.com/forum77.html
take care
Kate

Welcome to NT


Glad you're finding info to help you understand. The members here are eager to help. It's a great place to find some healing.