Hi all, has anyone else been approached about a medical trial at Kings that could possibly see them off of immuno suppressants altogether?
At my last consultation I was told about a new trial that would require 6 months of self administered injections with the result being that patients could be fully weened off of all immuno suppressants. I'm not sure what the injections are and not really certain what risks or even what the predicted success rate of this trial is anticipated to be.
I got a phone call this morning from Kings asking me to go up for a consultation regarding the trial. Just curious if anyone else knows anything about it.
Yes that seems like a good low dose. I'm not sure how the medical trials are run with regards to patient selection.
I have an ambition to one day be off of all medication, thats something I never thought could happen but has now become a real possibility.
I'm currently on sirolimous (immuno suppressant) and losartan (blood pressure), and I think the reason the blood pressure is up is due to the sirolimous.
I recently gave up omeprazole which I'd been on for years. The consultant suggested it at my last consultation, it was a bit uncomfortable about 2 days in and I had some nasty re-flux, but apparently thats what happens because the acid has been suppressed. And now, two weeks later it's fine.
I have just read the article and it refers to the fact that cells have to be removed before transplant to do this. So am wondering how people that have already been transplanted would be able to be included. Bit confusing..
But no Mike hasn't been asked, just coming up for 6years post.
Hi rodeojoe, I spoke to my consultant about a new trial and it sounded really good , he said a new genetic testing was done to see if the liver could survive without the immune suppressant, there were conditions I think it was 3 years post transplant , no episodes of rejection and you had to be over 50, so I was not eligible but he said we could discuss it again in september but at the moment I am in Edinburgh royal having a biopsy because my liver function tests are off 🙁
if that's the case I'm a long way off. Hopefully then there will be a way for us all. I know i was told when mycophenolate was stopped by Hepotolagist that a lot of transplant centres don't even use it.
I was offered the opportunity at Leeds. I am on low dose (.5mg) of Tacrolimus and 500mg MMF. In the end, I declined as I have had no adverse reactions and didn’t want to risk rejection.
Absolutely. I'm also on a low dose of immuno suppressants. I'm keen to find out the risks before signing up. I have high blood pressure thats controlled by Losartan, that may be due to the immuno suppressants, but that the only side effect I currently have.
Hello again , I don't know if it's the same trial that I spoke to my consultant about but if it is then I'm sure it was called LIFT and I was told that it was a new test that has been developed that could determine whether a liver had developed tolerance and therefore not need continued immune suppression, unfortunately I don't qualify for it but would definitely have been up for it because the medication is what is causing a lot of my problems 🌼🌼
I don't know if it's the same one as my consultant didn't mention anything about daily injections but we didnt get that far as it was after that my bloods started playing up so it went from possibly reducing the tacrolimus to increasing it , typical eh, or maybe a sign that it wasn't for me , 😊
Is that
The
Prospective randomised marker-based trial to assess the clinical utility and safety of biomarker-guided immunosuppression withdrawal in liver transplantation.
Hi. I'm on the trial now. For me, it's a really great thing. The LIFT team closely monitor you with visits usually every three to six months versus once every year or two and usually takes three to four years to completely come off of the immunisupressants altogether if things go well during the visits. They will schedule fibroscans every six months and biopsies once a year to check if there are any negative changes. I think this really depends on whether or not you're happy with taking the immunosuppresants forever or if, like me, they wreak havoc with the rest of your body and want to be off. I've been lucky in that my transplant was for hyper-acute failure (well, not really lucky that I needed that) because of a toxin I ingested, so didn't have long-term illness prior to the transplant and I've been producing more tachrolimus than I'm taking for the last two years, so a good candidate for the trial. If you've been asked, I'd consider doing it; you've got nothing to lose. If your levels change in any way, then you stop reducing and go back to a higher dose, maybe with some steroids for a few weeks just to help with any inflammation that may have occurred. I just had my last fibroscan and it my score was 2.1 down from 3.7 on my last one in November. Good luck and will be interested to see if you decide to do it or not, so keep us posted.
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Update after appointment at Kings
Post Transplant care at Kings
Hospital appointment!!
Celebrating International Clinical Trials Day. 
1st appointment at QE hospital
