First IVIG infusion on Monday

[gurs]

Ok, finally having my first IVIG on Monday..I guess Im getting 30cc of Gammagard. As I understand it, the slower the infusion, the better chance on less reactions/side effects. Will be getting some IV prednisone, but no benedryl since I cant breathe when I take it due to the extreme dryness. The doctor also ordered the saline drip after?
Any other suggestions? how many hours should this take? Im overly concerned since I have reactions to everything..

thanks!

Gursie

[pudmott]

Hi gursie,
I don't know anything about IVIG but i just wanted to say good luck and i hope all goes well for you


Pud

[Scottietottie]

Good luck from me too! 

[Pooh]

Hi Gurs,
Good luck on Monday we will be thinking about you. 

Take care,

Pooh

[eyeamdry]

Hi Gurs,
I hope this IVIG works for you.  Is the rheum giving it to you or another doc?  I know you've been to different docs.  I see our fave rheumatologist on October 6th.  Too bad I'll miss you by only a week (if that's where you're going.)  Let us know how things went, ok?  Lucy

[irish]

gurs, I think that you mean 30 grams of Gammagard. That is the first product that I was on only I got 80 grams.  Each 20 gram bottle contains 200 cc's. The bottles are 20 grams each but I think that they may come in 10 gram also. They run it in slowly to avoid the reactions. It will probably take you 3 to 4 hours to get this all in. Gammagard it thick and the bottle looks like it is full of egg white bubbles by the time it is empty. With every drop it forms a bubble in the bottle.

I get the IV Benedryl also plus the IV cortisone when I first start. At the end they usually run in 100 cc of saline to clear the line and I think it helps to "water" down the last bottle that they give you. Sort of rinsing out a milky glass.

Remember to drink plenty of fluids the day before and the day of. I always take decaf coffe with me plus water and pop. Remember to take a book or knitting etc to give you something to do. I get very sleepy from the IV benedryl and they have to put that in 100ccs of saline also other wise I get "stoned" and scare them to death. Ha Ha.

How often will you be getting this IVIG? I get mine once a month and will have to until I die or decide that I am too old and I don't care anymore. Or---the government may decide for me and not help pay for it. Good luck Irish

[kindandcaring]

Good Luck with it Gursie !

Irish can you say what the IVIG does for you and hopefully Gursie ?

Thanks

[gurs]

Lucy,

Our rheumy sent me to this wonderful hematologist/oncologist over at Michigan state.
I almost cried when I left his office. He was so smart and compassionate. After running some labs, he told me that I have no IGM immunoglobulins, low t-cells, and just alot of very bad antibodies, and that the Sjogrens/lupus just going crazy.
Im not due back to our rheumy until the end of october, sorry I will miss you!!! hope your doing well.

Irish, Im going to double check my dosage??? you have been so helpful...everyone here so wonderful!!! the heads-up is a god-send. Thanks to all the well-wishers.

Gursie

[Tricia281]

Good Luck Gursie!

Tricia

[eyeamdry]

Gursie, this sounds so positive!  I'm glad you were referred to someone who you like and will try and help you.  The other person(s) on here have been helped by seeing an immunologist and I hope you are too.    Lucy