I Hate Dialysis Message Board
Welcome,
Guest
. Please
login
or
register
.
October 24, 2024, 04:31:49 PM
1 Hour
1 Day
1 Week
1 Month
Forever
Login with username, password and session length
Search:
Advanced search
532606
Posts in
33561
Topics by
12678
Members
Latest Member:
astrobridge
I Hate Dialysis Message Board
Dialysis Discussion
Dialysis: Transplant Discussion
Prograf vs Nulojix
0 Members and 1 Guest are viewing this topic.
« previous
next »
Pages:
[
1
]
Author
Topic: Prograf vs Nulojix (Read 5657 times)
bleija
Sr. Member
Offline
Gender:
Posts: 572
Prograf vs Nulojix
«
on:
June 16, 2012, 09:37:05 AM »
so yesterday at my annual recheck, the transplant neph told me about another ooption of meds. It is brand spankin new, only been available for a year. there is only 4 years of study on it. It is givin as an iv ifusion once a month vs prograf twice a day. It seems to be the first alternative thaqt hasnt crashed and burned. Its not toxic to the kidney. At the 4 yeqar mark, patients have 15 to 20% better kidney function than those taking prograf at the same 4 year mark. for thew cons not much is known about long term issues,i am young and that is a big deal. also he said u u have a 1% higher chance forqaa type of cancer.
when he toldme about this i was like , hmm im gonna ask my IHDers and see ifg any of u have tried it.
at this point i dnt even know ifmy insurance will cover it, just more curious than anything
Logged
jeannea
Elite Member
Offline
Gender:
Posts: 1955
Re: Prograf vs Nulojix
«
Reply #1 on:
June 16, 2012, 02:44:57 PM »
I have not heard of that. I looked it up. It could be very exciting to try something new. Good luck!
Logged
Chris
Member for Life
Offline
Gender:
Posts: 9219
Re: Prograf vs Nulojix
«
Reply #2 on:
June 16, 2012, 03:53:28 PM »
I have never heard of it, but after 11 plus years on Prograf I doubt I would be switched. Cancer though is a risk with any of the anti-rejection meds tho.
One problem I see with this for people who are back working is having to take off work to get an infusion each month which would mean a possible non paid day off since most clinics are closed on a Saturday.
Would I be willing to try it with only 4 years of study, no. The issue I have is long term side effects are not known and probably only tested on non transplanted patients.
One must weigh the pro and cons and decide for them self on whether to try this med with given facts and doctors guidance.
Logged
Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
noahvale
Guest
Re: Prograf vs Nulojix
«
Reply #3 on:
June 16, 2012, 05:03:58 PM »
^
«
Last Edit: September 17, 2015, 02:51:17 AM by noahvale
»
Logged
cariad
Elite Member
Offline
Gender:
Posts: 4208
What's past is prologue
Re: Prograf vs Nulojix
«
Reply #4 on:
June 16, 2012, 05:08:59 PM »
I looked up Nulojix, it's the (unattractive sounding) trade name for belatacept. Did your nephrologist tell you there has only been four years of study on it? That is not true, more like ten years.. The four years probably only refers to Bristol Meyers Squibb's research under that name. I actually flew up to UCSF in 2007 to try to get into the belatacept trial and I spoke to Dr. Vincenti, the principal investigator. That man is a saint in my opinion. Anyhow, I would go for it. Ask if you can speak to any patients who have been on it and see what they think. At my transplant centre (Chicago) they were recruiting for belatacept trial participants, and a member on here (who does not post anymore) was put on it down at Emory, so it has been widely tested across the country. At Cedars in LA I mentioned Dr. Vincenti and the nephrologist talked about working on the belatacept trial with him up in SF, and said that drug was 'his baby'. The long term effects of prograf, cellcept, prednisone, et al. are not exactly pretty, so I doubt these could be much worse.
Here is UCSF's article about the first patient to be put on belatacept long term.
http://www.ucsfhealth.org/patients/mansfield_diana/index.html
Hope this helps!
Logged
Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria
People have hope in me. - John Bul Dau, Sudanese Lost Boy
KarenInWA
Elite Member
Offline
Gender:
Posts: 1041
Re: Prograf vs Nulojix
«
Reply #5 on:
June 16, 2012, 08:44:38 PM »
I would be open to trying it, especially since it is not toxic to the kidney. Maybe I will bring that up at my next appointment. I work FT, but I have a job that is flexible enough to work with me. Depending on where you live and work in relation to the transplant center, you wouldn't need to necessarily take a whole day off. Also, we as tx patients can usually be covered under FMLA, so that covers absences and/or weird shifts if you want to make up the time. I say less toxicity is worth it! As for the cancer, for me it depends on what kind and how that relates to my family history. Unfortunately, there is a lot of cancer on both sides of my family. I suspect I will get hit with it some day, even if I didn't have this transplant.
KarenInWA
Logged
1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011 - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
bleija
Sr. Member
Offline
Gender:
Posts: 572
Re: Prograf vs Nulojix
«
Reply #6 on:
June 18, 2012, 04:17:12 AM »
thats the waay i look at it, but then at the same time im likewhat happenes if at some pointit just doesnt work anymore. and plus i dnt even know how much it will be with insurane and copay. but i guess if it does just quit then they can switch me to prograf. im leaning toward trying it.
Logged
Chris
Member for Life
Offline
Gender:
Posts: 9219
Re: Prograf vs Nulojix
«
Reply #7 on:
June 18, 2012, 11:17:39 AM »
Is there a blood test to check levels? There probably is, but iPhone not best for research.
Logged
Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
KatieV
Full Member
Offline
Gender:
Posts: 236
Re: Prograf vs Nulojix
«
Reply #8 on:
July 11, 2012, 11:18:46 AM »
Quote from: cariad on June 16, 2012, 05:08:59 PM
I looked up Nulojix, it's the (unattractive sounding) trade name for belatacept.
My transplant team looked into belatacept for me. Unfortunately, trials have shown high rates of Graft vs. Host (if I remember right) if the person does NOT have antibodies to Mono. And I do not. So they consider it too high risk for me. Too bad, otherwise it seemed quite promising for me.
Logged
~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)
Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants. Currently doing NxStage short daily while waiting for a third transplant.
Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
bleija
Sr. Member
Offline
Gender:
Posts: 572
Re: Prograf vs Nulojix
«
Reply #9 on:
July 11, 2012, 02:11:31 PM »
I weeny with prograf the infusions would have been too expensive for me and I want children and there's no research to know if it would harm baby
Logged
Pages:
[
1
]
« previous
next »
Loading...