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Author Topic: No more Venofer at home, but Ferinjec in clinic?  (Read 3596 times)
cassandra
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When all else fails run in circles, shout loudly
« on: January 30, 2015, 06:02:20 AM »
Did anyone else on HHD in the UK had to change their Venofer, that you could just add to your 'machine' , to some injection with Ferinjec where you have to drive 1 hr to get to hosp so some paid person can stick it in you over the course of an hour?

I'm well PO'd with this. In 9 out of 10 changes of meds I get some allergic reaction, and was really happy to be all 'normal' now. Apparently a warning has gone out for the serious side effects with Venofer with HHD.

Love y'all, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
obsidianom
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« Reply #1 on: January 30, 2015, 07:28:07 AM »
Quote from: cassandra on January 30, 2015, 06:02:20 AM
Did anyone else on HHD in the UK had to change their Venofer, that you could just add to your 'machine' , to some injection with Ferinjec where you have to drive 1 hr to get to hosp so some paid person can stick it in you over the course of an hour?

I'm well PO'd with this. In 9 out of 10 changes of meds I get some allergic reaction, and was really happy to be all 'normal' now. Apparently a warning has gone out for the serious side effects with Venofer with HHD.

Love y'all, Cas
That's the first I have heard about Venofer. My wife gets it at monthly clinic. She does feel lousy for a day or 2 after it.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
chuckdims
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« Reply #2 on: January 30, 2015, 09:24:55 AM »
This is ironic because my clinic just changed the policy to allow me to give myself venofer at home with HHD...
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1986 - Born w/ Deformed Ureters
1989 - Bilateral Reimplantation of Ureters (Emory University -- Atlanta, GA USA)
2004 - Reduced Kidney Function Noted on Bloodwork, Kidney Biopsy Performed, Diagnosed w/ Stage III FSGS
2012 - AV Fistula Placed (University of Kansas -- Kansas City, KS USA)
2013 - Started In-Center Hemodialysis (September)
2014 - Started Home Hemodialysis on NxStage (July)
PrimeTimer
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« Reply #3 on: January 30, 2015, 07:12:50 PM »
Sorry to hear that, cassandra. What a pain (no pun intended) to have to go all that way! Geez, as if D patients don't have enough to deal with! Whenever my husband has needed an iron injection, they've given it to him at his monthly clinic visit over the course of an hour so they can monitor him for reactions. He doesn't know the name of it but says he's never had a bad reaction to it and in fact, feels good within a day or two after the injection. I am glad they monitor him but I could see where it would be a PIR (pain in the rear, again no pun intended) for those needing it often and having to drive all the way in to their clinics for it. Seems to me that if a patient hasn't had any reactions to it, then they should be allowed to give it to themselves at home.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
del
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« Reply #4 on: February 11, 2015, 06:04:44 PM »
Cassandra, same thing happened here with the venofer.  Hubby always took it at home and now it is an hour's drive to get the iron.  Here it is 2 shots within  3-8 days of each other.  Luckily here the iron infusions usually last 4 to 6 months.
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cassandra
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« Reply #5 on: February 12, 2015, 07:43:28 AM »
Here they say it's about half a year interval too. I checked the poss side effects of Ferinjec, and they look the same to me as with Venofer (I expect them to last the same length of time than  ;D   ) so I'm trying to keep my iron up with Spatone, at the moment.

I hope all goes well with your hubby.

Love, Cas
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
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