AnonymousNovember 16, 2011 at 11:34 pm
I posted last spring about trying Hizentra for SubQ after many years on Gamunex. I had a hard time with Hizentra and they put me back on Gamunex.
But I live rural and finding a home nurse is very hard – I have had 5 in the last 6 months. One did not flush my port right in the summer so in August I had my port replaced. Now I a have two more nurses and the last one took 6 sticks to get a needle in! Ughh!!!
So I checked and noticed that Baxter has released Gammagard for SubQ – wondering if anyone is using this for subq?
I am inquiring to see if this is a possibility. My main issue is administering since I live to far from a hospital for infusions and entering winter in the middle of the open prairie nurses hate coming here.
Let me know if anyone has tried SubQ since we last chatted!! I let you all know if I decide to try again.
AnonymousNovember 16, 2011 at 11:48 pm
Starli – The only adult CIDP’er I know, who is using SubQ, is Julie. Try doing a member search & I’m sure if you contact her she would be able to answer your questions.
I know there is 1 child who is now using SubQ. Her parents tell me they do the infusion at home themselves & it’s not difficult.
The last info I read on it was some people report needing to use more SubQ than previously thought due to fat absorption.
It’s good to see you here again. I’m sorry you are having such a rotten time with your nurses. May I ask what position you are in when they are trying to access your port? For Emily it always worked better if she was sitting up in a chair.
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