[Teacosy]

Hi all,

New to this forum, My mother ,who is 76 was diagnosed last June with M.G .She is going for IVIG tomorrow.
Have you any advice as to what food is to be taken or how much water she should drink before or during treatment. Any other suggestion would also be apprenticed

Thanks

[suev]

HI and Welcome!

I have had no personal experience with IVIG - but many in the forum have. From what I have read here, lots and lots of water is a good idea (before, during, after) and I believe some have said they take benedryl...and others have had it administered with the IV.

Hopefully someone will see this tonight and get you some better info.

[allen L]

drink lots of fluids, electrolyte replacement is good also like gatorades, since you pee alot when you get the iv.
Dont drown yourself with liquid, but I try to start drinking the 16 oz bottles of water 6-8 a day for 4-5 days before, during and after.
Also have the nurse premedicate with benadryl and tylenol. The benadryl puts me to sleep each time, but I dont have any allergic reactions and the tylenol keeps the headaches in check.
Remember, its different for everyone, but alot of fluids and pre medicate.

[motorcycle diva]

How was the IVIG treatment? I had it in September and was very pleased with the result but the cost is crazy expensive. $100,000 for 5 day tx. My insurance carrier decided it was preexisting after I had the treatment. Wanna buy a motorcycle?? LOL

[scrubbs]

I just had infusions on Thursday and Friday. Saturday I had a mild allergic reaction.

The only time I had a serious reaction was the first time at a new infusion center without benadryl and tylenol because the Dr. did not order it.

Make sure your Dr. ordered benadryl and tylenol before your infusion or bring 2of each with you.

Tony

[MzTracey]

Hello..
I have been getting IVIG treatments for about 15 years and I have learned through the years to hydrate with gatorade and water at least a day or two before as well as during the treatment and a day or two afterward. Although it feels like water overload and i feel full I know if i dont drink up then a day or two later I will be suffering with the worst headache/ fever, body ache ever. I also pre medicate with tylenol and a 5mg non drowsy claritin tablet. Benadryl makes me feel weak so this alternative works for me.
As far as food I still eat as I normally do.

[koilover512]

Hi,
I only had IVIG once. When I started treatment I had to receive IVIG to start my prednisone dose and mestinon. I was in the hospital for two days. But I think the only reason for this is because the bottom part of my lungs were not expanding. Anyway, I ended up getting viral meningitis. I have a friend with a different condition and the main treatment he receives is IVIG. There are different kinds of IVIG, so if your mother has a bad side effect maybe there is a different kind that will work for her. I hope everything works out for her.

[brandonc]

Im currently doing my first round of IVIG (day 4 of 5). I wish i had known about hydration because I have the WORST headache right now. but other than that its pretty easy. there are 3 different brands of IVIG so try to get the one that they can put into your body at 400 mL/hr or else you will be at the hospital ALLLLLLL DAY. I had the slow one the first 2 days and that one maxes out at 150 mL/hr i was there for 6 hrs both days. it goes by weight and i had 687 ml of the stuff. try to see if the doctors will let you call ahead too so they can start mixing the IVIG before you get there, it takes an hour and a half to 2 hrs for them to make it and it costs about $10000 per bottle so they dont want any cancellations so a lot of places will only start making it once you get there.

[Juanitad]

"try to see if the doctors will let you call ahead too so they can start mixing the IVIG before you get there, it takes an hour and a half to 2 hrs for them to make it and it costs about $10000 per bottle so they dont want any cancellations so a lot of places will only start making it once you get there"

They also have IVIG premixed in bottles that are ready when you get there. I am a diabetic so I can't take the ones that have glucose in them. The brand I use (and I wish I could remember the name) has no glucose and is premixed in bottles. I have had it running at 225/hr max and I know there are some who do it faster than that (and a lot that do it slower!)

Good luck.

[brandonc]

Originally Posted by Juanitad

"try to see if the doctors will let you call ahead too so they can start mixing the IVIG before you get there, it takes an hour and a half to 2 hrs for them to make it and it costs about $10000 per bottle so they dont want any cancellations so a lot of places will only start making it once you get there"

They also have IVIG premixed in bottles that are ready when you get there. I am a diabetic so I can't take the ones that have glucose in them. The brand I use (and I wish I could remember the name) has no glucose and is premixed in bottles. I have had it running at 225/hr max and I know there are some who do it faster than that (and a lot that do it slower!)

Good luck.

I cant remember the name of mine either but i max out at 400 ml/hr now with the new stuff