[bny806]

Hello everyone!!! I hope y'all have all been doing well!!

I have been maintaining fairly well on IVIG every 3 weeks.. but i definitely feel when it wears off , i can't quite make it to the 3 week mark without symptoms getting worse... I had a spell of weakness a few months ago that was scary!

Anyhow... My doc wants to try me on SubQ IVIG, since it seems like i'll likely be doing this for a LONG time (going on 4.5 years now).. He said that I can do it from home weekly (so hopefully wont' feel it wearing off going so long without it).. and I won't have to sit there for 8 hours to get infused... Plus I tend to get aseptic meningitis at times..

ANyone have any experience with this? I'm curious to hear what Y'all think!

Thanks in advance!

[4-eyes]

I've used Hizentra for the last 18 mos. I think there is a thread on it. In general I like it. The side effects are the same for me. My insurance has refused to fill my script as of July, saying it's not medically necessary, so be prepared for obstacles. Let me know if you need more info.

Good luck!

[bny806]

Thanks! i'm sad to hear it's the same side effects.. my veins always hurt for a few days afterwards, i wouldn't think that part would happen with it does it?

I have used Gammunex the past 4 years.. is it more expensive than that + the nursing costs of an infusion center? It seems like insurance would like to not have those additional costs. So do you get symptoms every week now, i don't want to feel crumby weekly instead of every 3 weeks!

[4-eyes]

It can cause hot swollen welts in the skin that can be sore for a few days. Not every time, but sometimes. Yes, I have symptoms to a varying degree each week. I prefer Gamunex IV and am trying to go back to that since insurance denied my appeal for Hizentra. I have a port anyway, so so much less uncomfortable for me.

If I was going to an infusion center, which I've never done, I would probably find the Hizentra more appealing. Independence takes precedence for me.