General — TransplantLyfe

General

Research into better immune modulators

KarinExpert
Transplant Patient
Updated April 23, 2022 in General

It is a disgrace that many liver, heart, lung, pancreas, intestinal transplant pts need new kidneys ten plus years post transplant due to tacrolimus (prograf). In fact, it is one of the most common side effects of the drug - kidney toxicity - and I am surprised that scientists and industry have not brought fwd better drugs in so many years. Yes, we have long acting tac - envarsus - but that is merely symptomatic improvement vs mechanistic, and Belatacept is only approved for kidney transplants and is not even used much.

I want to scan the literature in immune oncology and tolerance research to see if there are drugs that could be repositioned for transplant drugs - I wonder if there is more interest for this and if we could try to make this a project for TransplantLyfe! Raise funds and lead this effort… then start a company or introduce the project to a manor pharma?

ideas?

1 - 16 of 16 Replies

  • BrucePTransplant Patient

    Karin,

    You have a great idea. If I were not writing a book, I'd be there with you. Don't know how long such a project might take, but maybe I'll be done writing before you reach your goal. God bless!

    April 23, 2022
  • KarinExpert
    Transplant Patient

    @BruceP what is your book about!

    April 23, 2022
  • BrucePTransplant Patient

    We've had four heart transplants in our family plus removal of a large brain tumor,

    April 23, 2022
  • BrucePTransplant Patient

    That's what I'm writing about. It all started with my grandmother. Then my dad. Then we nearly lost our daughter due to genetic related heart issues. At the time she was only 5 months old.

    April 23, 2022
  • Tsutton2015Transplant Patient

    I am interested is helping with this research. I currently tale tacrolimus for my liver transplant.

    I do try to start my day by drinking lemon water with vinegar to flush the kidneys, then drink at least 1 gallon of filtered water, (to remove the chemicals and heavy metals) per day.


    Ihave my 3 year post transplant visit coming up at the end of May and I will discuss this with my team.


    My name is Terry Sutton and my email address is tsutton@octsutton@oceanoceandreamshealing.org

    I am the founder & executive director of Ocean Dreams Cancer Healing Center. We are a 501 C-3 not for profit, possibly that could help us get a grant?

    Cheers

    Terry

    April 24, 2022
  • KkqueenTransplant Patient

    Karin,

    I am now off Tacro, due to BK virus, and am taking Sirolimus and Leflenomide at this time. My function is declining, for 2 years, as I battle this virus. I am interested!

    April 27, 2022
  • KittyTransplant Patient

    Hello! Yes! Please! They put me on mycophenolate with the tac & now Mt neutrophils are .3!!! & WBC are 2.5!! They want me to inject into my stomach now & the side effects of that are horrific!! Why wont they just let me come off the mycophenolate?? I'm so tired of playing their games. Anyone else have this issue?

    April 29, 2022
  • DonnyCTransplant Patient

    Yep. IMO, toxicity from these immunosuppressants are the greatest hurdle to long term transplant success across organs. Yes, there are many short/medium/long term hurdles but time + daily immunosuppressants is the issue that consistently surfaces. Personally know 7 long term recipients referred for kidney transplants since January because of toxicity damage. For whatever reasons, motivation/money for pharmaceutical alternatives hasn't been there for the past couple decades.

    May 6, 2022
  • Sdey0522Transplant Patient

    @Karin - Yes! This is a big & relevant concern for sure.

    There has definately been a lot of progress, based on the better outcomes in terms of longevity post Transplant. However more research & better anti-rejection drugs are needed. Envarsus has been in use in kidney tx patients for quite a while, not for too long in the case of heart recipients.

    Along with all my fellow recipients, I do worry about more damage to my kidneys, post heart transplant. I'd be interested to participate & learn more about better options to minimize the risk.

    Luckily, since my transplant over 7 years ago, my dosages of Tacro have been relatively low (initially about 2 mg ×2 per day & since the last 3+ years, the dosage has been 0.5 mg ×2 daily).

    Please do keep us informed about developments in this area.

    Thank you!

    May 9, 2022
  • JeanmarieTransplant Patient

    I agree. I've been off Tac for over a year now. And on the Belatacept infusion. My body is much happier. My stomach is definitely happier too. It's not too bad getting a 30 minute infusion every 4 weeks.

    August 5, 2022
  • MelsammTransplant Patient

    Yes please keep us informed I am on tac for liver transplant to post 1ye 8 months😊

    I have ckd but it is stable right, is what they tell me.

    August 8, 2022
  • Sdey0522Transplant Patient

    Good to hear, @Jeanmarie & @Melsamm Best of luck on your Transplant Journey.

    August 9, 2022
  • MelsammTransplant Patient

    Thank you, where r u on your journey😊

    August 9, 2022
  • Sdey0522Transplant Patient

    @Melsamm - I was blessed with my Gift of Life (a heart) on April 20, 2015.

    I'm extremely lucky, completely blessed & eternally grateful.

    August 10, 2022
  • MelsammTransplant Patient

    Congrats to you,

    August 10, 2022
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