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Author Topic: NO daily meds with once a month IV immunosuppression??  (Read 7330 times)
DialysisGoneFOREVER
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« on: October 03, 2015, 07:06:17 AM »

I've heard that it's possible to get once a month immunosuppression via IV where you would NOT need to take daily pills! Has anyone else heard of that or know anything about it?
« Last Edit: October 03, 2015, 07:17:08 AM by FailingTransplantHELP » Logged
Zach
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« Reply #1 on: October 03, 2015, 07:13:06 AM »

This is one of many items I found on Goggle:

The First Intravenous Primary Immunosuppressant: An Expert Interview With Elizabeth B. Begley, RN, BSN

Elizabeth B. Begley, RN, BSN Faculty and Disclosures
CME/CE Released: 03/22/2012; Valid for credit through 03/22/2013


INTRODUCTION
For the past 30 years, primary maintenance immunosuppression regimens with the calcineurin inhibitors cyclosoporine and tacrolimus in combination with other agents such as mycophenolate mofetil, mycophenolic acid, sirolimus, azathioprine, and corticosteroids used in kidney transplantation have been oral regimens. Although cyclosporine and tacrolimus can be administered as IV agents, maintenance therapy is administered orally. Although other agents such as polyclonal and monoclonal antibody preparations -- also used in kidney transplantation -- are administered by IV infusion, these agents are administered on a short-term basis, usually as induction therapy. At a time when the patents for a number of these agents have expired and generic formulations have been approved, belatacept (Nulojix®, Bristol-Myers Squibb, Princeton, New Jersey) is making its clinical debut. Belatacept is a soluble fusion protein that blocks costimulatory engagement of CD80 or CD86 with CD28 on T lymphocytes to prevent T-lymphocyte activation. As such, belatacept is the first long-term IV maintenance therapy for solid organ transplantation. Belatacept is the first and only drug approved in a new class -- costimulation blocker -- of therapeutic agents approved for use as a primary immunosuppressant in adult kidney transplant recipients. Medscape spoke with Elizabeth B. Begley, RN, BSN, Research Nurse Supervisor, Emory Transplant Center, Emory University Hospital, in Atlanta, Georgia, about some of the practical aspects of implementing a new standard of care for primary maintenance immunosuppression for kidney transplantation. This program is just one in a curriculum on Medscape, developed by leading investigators in the field of transplant immunosuppression for healthcare professionals, and designed to trace the changing landscape of immunosuppression in kidney transplantation.

To read more:
http://www.medscape.org/viewarticle/760472
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« Last Edit: October 03, 2015, 07:14:20 AM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
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DialysisGoneFOREVER
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« Reply #2 on: October 03, 2015, 07:19:27 AM »

WOW this betalecept sounds great! It doesn't have any worse side effects than Prograf and Cellcept I hope? Getting a once a month treatment is SO much better than daily meds assuming it's safe!
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SooMK
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« Reply #3 on: October 05, 2015, 06:13:04 AM »

This doesn't really appeal to me unless the side effects were less than the daily meds. A year and a half out from transplant I take 3 pills in the morning and 5 in the evening. It's pretty easy--so much less than at first of course but also way less than I had anticipated. I can certainly see that this might work well for others and the more options to make it easier for more people the better.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
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Simon Dog
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« Reply #4 on: October 05, 2015, 08:14:32 AM »

WOW this betalecept sounds great! It doesn't have any worse side effects than Prograf and Cellcept I hope? Getting a once a month treatment is SO much better than daily meds assuming it's safe!
If they make you go to a clinic or doctors office for the shot that could offset the convenience of not doing daily meds.
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Deanne
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« Reply #5 on: October 05, 2015, 08:57:10 AM »

The pills are a minor inconvenience for me and as long as my labs look good, I'd be reluctant to change. I think this would be especially good for patients who struggle with compliance. For me, I'd hate having to drive in for an injection every month, but if I struggled to remember to take my meds on time every day, a monthly injection might be great.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
DialysisGoneFOREVER
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« Reply #6 on: October 05, 2015, 03:49:26 PM »

WOW this betalecept sounds great! It doesn't have any worse side effects than Prograf and Cellcept I hope? Getting a once a month treatment is SO much better than daily meds assuming it's safe!
If they make you go to a clinic or doctors office for the shot that could offset the convenience of not doing daily meds.

It depends if the side effects were the same or less than the pills. If there are no worse then why not go once a month for a shot? I have the fear that at some rare occasion I won't be able to reach my meds. What if something happens when you are traveling overseas? What if you really oversleep or something? What if you lose the medication?
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Rerun
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« Reply #7 on: October 06, 2015, 02:26:49 AM »

I will take pills over needles anyday.
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Hootie
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« Reply #8 on: October 06, 2015, 09:02:20 AM »

Dr Pearson and his team at emory hospital pioneered the infusion therapy and fda approval in 2009. My understanding is that it does not replace all oral drugs just most. You get the infusions and blood work at same place and time once a month. That's what we were told at emory as we are on list and being finalized for living donor program. There is a video link on emory hospital website with Dr Pearson talking about the infusion therapy. I will try to find it.
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Transplanted  December 7, 2016
DialysisGoneFOREVER
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« Reply #9 on: October 06, 2015, 09:25:58 AM »

Dr Pearson and his team at emory hospital pioneered the infusion therapy and fda approval in 2009. My understanding is that it does not replace all oral drugs just most. You get the infusions and blood work at same place and time once a month. That's what we were told at emory as we are on list and being finalized for living donor program. There is a video link on emory hospital website with Dr Pearson talking about the infusion therapy. I will try to find it.

It doesn't?? Then what oral drugs do you still need to take with the infusion?
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Hootie
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« Reply #10 on: October 06, 2015, 10:24:44 AM »

The list of required drugs that was shared with us are belatacept (infusion therapy once a month), cellcept,  and valcyte (for first six months). Seems like they also mentioned prednisone. The video states that the outcomes are better for the infusion therapy. The link has several videos attached. Our nephrologist said when we get to steady state after transplant that the infusions can be done in her office.

http://www.emoryhealthcare.org/transplant-center/videos/belatacept-video.html

We are excited about the eventual outcome.  :2thumbsup;
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
DialysisGoneFOREVER
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« Reply #11 on: October 06, 2015, 02:01:21 PM »

I read at the clinicaltrials.gov site that it replaces prograf. That means even with the injection you must still take Cellcept and prednisone. So it's somewhat of an improvement but you still need twice daily meds which SUCKSď
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Hootie
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« Reply #12 on: October 06, 2015, 05:38:35 PM »

That is correct. You take either belatacept or pro graph not both. If you watch the video, they are selling it as a better outcome with the belatacept.
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
DialysisGoneFOREVER
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« Reply #13 on: October 07, 2015, 01:08:36 PM »

That is correct. You take either belatacept or pro graph not both. If you watch the video, they are selling it as a better outcome with the belatacept.

I hope one day you can JUST get the shot once a month and NOTHING else!
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Angiepkd
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« Reply #14 on: October 09, 2015, 07:27:45 PM »

My neph wanted me to try the belatacept.  I understood him to say it replaces prograf and is not nephrotoxic.  I have been leary of it because it requires an IV each month at the hospital.  My veins were destroyed from being treated with amphotericin b (or ampho-terrible) for cryptococcal meningitis.  I have been in the treatment room with several patients who were receiving their infusions, and all said they had no side effects.  The nurse that runs the treatment area cringed when I mentioned switching, since it takes her 2-3 sticks to just get blood.  I was wondering if I could have a small port put in, but she didn't think so due to infection risk.  I am definitely interested, though, as I am very sensitive to prograf and have many side effects.
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
DialysisGoneFOREVER
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« Reply #15 on: October 24, 2015, 02:30:20 PM »

Let us know how you do on belatacept if you take it.
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