[Lin_Z]

Hello all,

So I tried IVIG back in December. Day One I was in the chair for 4.5 hrs. Day Two the nurse said because I handled the first day so well we could do it in 2.5 hrs. That night I was in the ER with horrible head pain and nausea. I honestly have never felt a pain like that in my entire life. My neuro cancelled the rest of the treatments.

Fast forward to April when I finally have the courage to try again.

I get to the infusion suite and the nurse asks me if I care of we do it in 4.5 or 2.5 hrs. I ask her if it makes a difference, she says no. The next day I'm back in the ER with what drs tell me is probably aseptic men. Treatments cancelled again.

I had a follow up with my neuro last week and brought up that the infusion was done in 2.5, and if we slowed it down perhaps I'd do better. He said it makes no difference, I'll always have that reaction.

I'm going back tomorrow because I've been so upset and stressed out about my lack of options that my symptoms are flaring up pretty bad.

Should I look for a second opinion or do you guys think this is normal??

[pingpongman]

It is not normal. I get a fast rate (2hrs) but others are really bothered by fast rate. The nurses at the infusion center should know better but even more important your doctor HAS to know better. I would find a new doctor if possible.
Mike

[cait24]

Rate does matter. The slower the rate, the less luckily you will have a reaction. I had a very bad reaction the first time. They now do my rate at about 5 hours and I switched from gammagard to gammunex and have no reaction. I also do not take the benadryl, I do better without it.


I would ask them to slow it down and also consider a different product. Gammunex seems to have less reaction (more expensive) than gammagard.

good luck
kathie

[bny806]

yes, yes yes, rate DOES matter - it makes all the difference! I got horrible aseptic meningitis my first loading dose- they ran at 205.... they threatened to take it away from me as well, but we tried again at a lower rate.. when we would hit 70, i felt the head pain start and even had a bit of chest pain too... for the longest time we could never exceed 70... slowly, after months and months we increased the rate to now 100 (i've been doing this for 3 years now)..
We also switched brands to gammunex, which is considered to be a "cleaner" ivig, therefore less reactions...

For me, the rate we increase the rate (at the beginning of the infusion, it is standard for my infusion company to go up every 15 minutes until you hit your max rate.. we do every 30 for me.. makes a big difference)

that, and tons of water! Good luck!

[029anser]

ivig rate protocol from Midwest university infusion center

1. vitals checked, ivig started at 30cc/hr x 15 minutes
2. vitals rechecked, if ok, bumped up to 60cc/hr x 15 minutes
3. vitals rechecked, if ok, rate increased to 100cc/hr x 15 minutes
4. vitals rechecked, if ok, rate increased to 150cc/hr thereafter and NEVER increased per infusion nurses

I had 22 infusions over 14 months at 50gm total per infusion for cidp

drank 3 x 20oz gatorades per infusion and went to infusion bathroom every 30 minutes with my IV pole in my hand...also took 500mg Tylenol before and
took another 500mg Tylenol when last 10gm vial was hung

never had a problem with headache or aseptic meningitis

bottom line: don't let any nurse increase the dose above 150cc/hr w/o dr ok

[limpy]

Oh, yes! As everyone said, rate does matter! Don't let anyone tell you any different. Of course, they want to get you done and get you out of there so they can put someone else in your chair, but that should not come at the expense of your comfort or health.

[Juanitad]

It shouldn't be how long it takes, but the rate they are infusing you. My infusion center won't go over 200, but I have had higher at other centers. Apparently, you need to run slower so you won't get the bad side affects.

Good luck on finding the rate that works best for you.

[ElenaG]

Rate does matter. They always say that, they say it to me just tell then you had a reaction and you need it slow. Have you ever tried plasma? I have that it's better for me.