Any help for IVIG problem

Are you taking tylenol and benadryl?

I need to take it every fours hours and need to take it for two days post IVIG or I am one sick puppy!

It took awhile for me to figure this out but it is working.

Also you need to drink lots before IVIG and continue afterwards as well.

Hope this helps

Rhonda from Canada

What are your symptoms?

My daughter has better success with Motrin than with Tylenol. You can also take Aleeve. Have you tried taking Benadryl and Tylenol after your infusion as well?

Have you thought about having your treatments once a week instead of 2 days every other week? It may help with your symptoms. You might be getting too much at one time.

Does your infusion nurse start the IVIG out slowly & then periodically ramp it up?

Kelly

Start hydrating and pre-medicating 24 hours before your infusion, and keep up that regimen for at least 24 hours after. Infuse at as slow a rate as possible. You can try heat or ice on your neck to see if that helps with the headaches. Good luck.

I went to weekly treatments to avoid those headaches and chills. Additionally, my doctor stopped the benedryl and now I get an IV pretreatment of Famotidine (20mg) instead. Seems to be helping. Good luck!

One is, are you using only one brand of IVIG? Talk to your docs about trying other brands…can’t hurt?
And by slow rates, what do you mean? It takes two hours or seven hours and for how much? Web up the brand of IVIG and read the ‘recommended dose administrations’ -it mite require come calculations from metric to real life? But it could help you tolerate the infusions better, by changing when the rates are ‘upped’ during your infusions. Pre-meds can also help to a degree, either just Benedryl or the like and/or plus Tylenol.
You mite also consider the sub-cutaneous infusions…. there has been discussion about this extensively in the CIDP forums.
OR, consider having an IV port installed – I had one put in last year, and the stuff goes in much faster [with less pain to the arms!]. I’m getting a healthy dose of ivig now with the port in half the time, and overall fewer side effects than ever!
Ultimately between the hydration and pre-meds…you mite find YOUR happy medium. First try different brands, That’s the easiest route to start with.
Please don’t give up now! Try variations and then see. So many of the other options aren’t as effective. Keep faith and hope!

I know that my nurse will intrevenously hydrate her patients who have this problem, before the IVIG.

Please use this Forums search feature to see older posts concerning IVIG and how its administered. The IV rates must be SLOWLY raised over an hour or more. Most infusion nurses are not trained to give IVIG. Even IVIG nurses must learn the best way for YOU to receive it.

My highest infusion rate is “90” and I get 50 grams over 61/2 hours with 2 bags of fluids to help hydrate.

The first 1 1/2 years I got severe headaches, horrid nausea and muscle cramps from it but it became my life saver. I got IV nausea med(s) before infusion started, IV Ativan at the infusion clinic for muscle cramps, IV predisone when the reactions got to bad and bags of fluid too. I always pre-treated myself with 50mg. Benadryl and 2 Tylenol. Drank lots of bottled water the clinic had on hand. I even had the infusion stopped when I felt too ill. You must tell the nurses immediately how you feel so they can help. Are the nurses checking your blood pressure before and during the infusion to see if it goes up when infusion rates increased?? They are suppose to do this.

At home I had prescription medications on hand for migraines, Ativan (muscle spasms), predisone and nausea. I would lay on the sofa with nasty migraines in a sweat. Now I just have nausea mostly but get extra IV Zofran for that.

I was having 3 days in a row of IVIG and felt so ill afterward. Now having 2 days one week and one the next-working out much better for me plus having them at home.I just finished an infusion earlier today and am feeling okay.

“Homeagain” is right. You’ll find the right combination for you to feel your best on IVIG. Keep us posted on how you’re doing.

[QUOTE=Liza]I was diagnosed with CIDP a year ago and IVIG has saved my life but the treatments are hard on me. I am just doing it 2 days every other week because of terrible headaches. I drink lots of fluids and take Iv fluids while they give the IVIG and have the IVIG run in at a slow rate. Is there anything else we can do.
Thanks for your help.
Liza[/QUOTE]

Hi Liza,
I sent you a PM, please check your messages. I started a long post and it disappeared when posting. Happy to share the information but not sure if you were coming back to the thread or not.
PM me if interested!
jdunk