Prograf vs Nulojix

[bleija]

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

[jeannea]

I have not heard of that. I looked it up. It could be very exciting to try something new. Good luck!

[Chris]

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.
 

[noahvale]

^

[cariad]

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!

[KarenInWA]

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

[bleija]

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.

[Chris]

Is there a blood test to check levels? There probably is, but iPhone not best for research.

[KatieV]

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.

[bleija]

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