I'm new! My husband has severe PN with loss of sensation in feet (many years) & rapidly painful progression of loss of control of hands. His neurologist is recommending a trial of IVIG, 4-5 days of infustion then 1x monthly for the next 3 months. Has anyone tried this? (Note - he does NOT have CIPD.)
Thanks,
Szarib

Hi - if he can get the IVIG then I'd definately try it - for some people here on the forum it works great.... I was on it for a year and a half, every week - high dose - didnt have definate auto-immune markers though - I think the doc was experimenting - I'm seeing a new neuro and it is on hold while condition being re-evauluated (looking more at genetic or paraneoplastic conditions)... however, it may help... and worth a shot... (does you hubby have a definate diagnosis?)

Some people here (I'm sure they will post) love their infusions - aside from a few side affects they feel much better after - personally I dreaded them 'cause did not notice a big change but the side affects were real hard on me (nausea - very flu like symtoms, etc.) as the treatments go on they usually lessen some and some people get no side affects at all... they are probably starting with 3 month trial to see if any change - its a very expensive therapy and if you cannot show improvement to insurance they usually will no longer pay for it....

Do you need links to information about ivig? Also, there is a magazine called IG Living - very information - you can just google their site and read their magazines on line or order for home for free.....

I hope that it IVIG does help him... again, for those it helps its wonderful - and a tough med to get so he's lucky to get to try it!

Take care....

to get IVIG....There are a very many on-label and off-label uses for it.
The way you state your husband is to start it is standard and safe protocol. And a trial is usually the only way to see if it helps. And for many having different conditions it helps from 20-60% who receive it.
Here is are some very long discussions about it from a while ago:
http://neurotalk.psychcentral.com/thread14904.html
http://neurotalk.psychcentral.com/thread15773.html
http://neurotalk.psychcentral.com/thread20207.html

Another issue that needs to be considered is insurance. IF you've a top notch neuro he will 'find' a way to clear it thru the insurance mazes for approval. If you are on Medicare/Medicaid tho it gets very sticky unless you have supplemental insurance and the co-pays can be killers. Medicare etc only now pays for what are called 'genetic or inherited' conditions and not those such as CIDP[acquired].
Here is one insurance plans' criteria for approval to administer IVIG and what testing must be done in advance:
http://www.aetna.com/products/rxnonm...IVIG_2007.html
[BTW, I'm surprised to see the requirement of a nerve biopsy-in this document as 6-months ago they stated that seural biopsies were not conclusive/too invasive and that punch biopsies were still experimental. Soo, you need a doc who is REALLY up on these things, and it sounds like yours is]
Here is another plans requirements:
http://www.bluecrossma.com/common/en...ulin%20prn.pdf
Now keep in mind that these are 'general' guidlines and may not relate to your particular coverage. Wish it was simpler? But, Your prescribing doctor's office should be the one to dot all the "I's" and cross all the 'T's.

If there are no 'reactions' that are serious, and there is 'some' improvement the treatments could be continued indefinitely. Depending on your insurance and your doctors orders you might have to continue infusions at a hospital or 'infusion clinic' or thru a home service. I have done all three and really prefer the home service! Meds and all the other stuff come the day before I'm to start infusions, nurse comes the next two days and I'm done. Just be sure to keep a record of what brand of IVIG is used, and notes of the dose each time as well as the rates. Faster rates can cause BIG-TIME headaches! That will not be done in the hospital setting, but in other settings it is known to happen.

As for actually getting the stuff? Well, yes I have CIDP, but it was over a year before I was finally diagnosed and treated. I really do know about the hands issues - to need to use both hands to use a fork or spoon to get food from a bowl to your mouth is not a graceful or fun thing! I saw improvement by my second day of infusing! For others it can take two or three rounds to kick in, for some others as long as six months. So be patient? As long as it doesn't get worse [whatever it is!] that can be a blessing in itself.

I no longer 'love' my infusions per se, because after four years of having 'IV lines' put into me, I'm becoming what nurses call a 'hard stick'. But there are ways around that if and when needed. I do APPRECIATE them greatly tho, because I am no longer totally reliant on my cane and can stand and walk for 1/2 hour to hour periods and can drive-tho carefully. I plan on keeping as mobile as possible for as long as possible! I got a lot of that back because of the IVIG, no doubt about it - I hope your husband gets some help and relief with it as well.

Please don't hesitate to ask questions about it all. Also do check out the web site Kmeb cited: http://www.igliving.com/ Just click on the 'blue'.

Keep us updated on it all, please! - !!! - j

PS I know it is a LOT to take in, but keep at it? I hope you find that it is worth it! I truly do - I know that PAIN!

Thanks!!!!! This is so helpful & encouraging. I'll check all the links & keep all my digits crossed for good outcomes, & will let you all know the results.
Szari

Thanks! He has no definite Dx - ideopathic PN. I'll check out the magazine & let you know how it went!

Hi!
A report on hubby's 5 day 300 ml IVIG treatment. No positive or negative results. But we were grateful to get the chance to try it, courtesy the VA medical services. There will still be a 3 month, one time per month follow-up. I don't know what else he can try.
Thanks again for your support & suggestions!!
Szari

To get you into a 'trial'? Any signs of "immune" issues to go with it? Or muscular dysfunction?
No reaction doesn't mean it won't kick in! Sometimes, for some folks it can take 3-6 months of infusing for the effects to start working. Trying it out for 3-6 months IS a standard kind of approach from all I have read. Just a 'one-time' kind of treatment tho, I would be suspicious of..
I was lucky that I felt it working on the second day of the first round? But there were months tho later on, when I was infused with brands of IVIG different from my prescribed brand and during a several month period...I really wondered WHY I was doing this?
With that in mind, DO keep a record of what brand and the dose amount and also the dose rate each and every time your husband gets infused. Now I have been consistently on one brand and no ill effects and only benefits.
I DO understand about the hand weaknesses! When I first came down with my issues, it took two hands in a death-like grip to get any food or liquids into me! And lots of accidents! Not graceful at all!
Just THINK POSITIVELY? That the second time will be the 'charm'!
As for the new pains? Yes, that could be the nerves doing what I call 'waking up'? [It can either be healing or just re-activating] This combination of new 'feelings' can be very disturbing, especially given all he has probably gone thru. New, different feelings on top of all the others that got you both to where you are are SCARY at the least? Think: Waking UP...GOOD! It's kind of a brain-washing thing, but the hope helps keep the sanity to a degree....Being sane is useful.
The docs will probably be taking lots of blood tests over the next month...before and after infusions. See if you can get copies of these and there are sources some of us can refer you to to help you 'decipher' what all they mean.
OK all said and done? When is his next infusion?
Good hope and things to happen!!! 's!! - j

Hi!
I'm not sure how to use this site as far as replies go, so hope you get this!
Hubby's 5-day 300ml per day treatment of IVIG had no bad effects but we don't see any improvement, perhaps more pain for his hands which may mean some increase in sensation???? There will still be 3 monthly follow-ups. Perhaps there is still hope for positive outcomes. We feel grateful that we were able to get this trial, courtesy the VA medical services. Thanks for your support!
Szari