I understand that trials are forthcoming via some UK hospitals, which will explore the feasibility of post-liver transplant patients being able to live without any immuno-suppressant medication at all.
My understanding is that trial participants will be/are drawn from cohorts already susceptible to conditions the probability of whose incidence is increased by current meds (eg, high blood pressure).
Are there any researchers or clinicians out there who can shed more light on this work?
I have discussed this with my consultant - I am 4 years post transplant - and have been advised that Leeds will not be inviting people to take part in trials because of the risks associated with possibilities of rejection. I will be interested in reading of others' experiences if they are involved.
Hi I am under the care of Kings and have been asked if I would be willing to take part to date I have only had the information but not had a formal interview they were supposed to be telephoning me but have not had a call yet There are 148 patients spread over 3 countries and you are not automatically accepted it depends on how the medical goes ( I am 5 years post transplant) i will keep you informed on what I decide
Also it's involves all transplants heart liver etc 💉💉
Thanks for this, poolebh123, it was KCH I heard about the trial through.
Hi,
We might not be talking about the same trial as this does not involve other organs, unless they are involved in similar but different trials as this research is anti rejection which would benefit all transplantees.
The benefit of signing up is that you are given drugs that for reasons I don't fully understand (but I think may be cost related) and are greatly beneficial immediately after transplant. Also the after care is second to none, as you are constantly given full health checks, as this is part of the research. And I had the phone numbers and emails to a couple of consultants that I could phone/email day or night for health related questions.
I think you might be refering to this trial gtr.rcuk.ac.uk/projects?ref...
I have just finished the trail for this, having been the first patient and on it for a year. Being that I was the first patient I was given a lower dose of the T-Cell therapy than is likely to allow me to fully come off immuno-suppressents. I think there maybe two other recruited patients of which at least one has been dosed. My understanding is that after us three, three more will be recruited and have a higher dose.
I am on quite a low dose of immuno-suppressant and this can be attributed to both the T-Cell therapy and the dose of AGT en.wikipedia.org/wiki/Anti-... that was given immediately post transplant for patients on the trial.
I can report that I've had no side effects and will be stopping the tacrolimus drug after Xmas. However I will continue with a low dose of sirolimus (but I believe this is slightly less toxic).
Information about who can and can't be recruited and the criteria:
This study will provide the safety, tolerability and some efficacy information for Treg immunotherapy in patients who have had a liver transplantation. In particular liver transplantation patients whose MELD score at transplantation is less than 25 at the time of transplantation (excluding patients with HCV, autoimmune liver disease). The majority of these patients will be undergoing liver transplantation for cirrhosis secondary to alcohol and/or for HCC in the setting of Hepatitis B, alcoholic or cryptogenic cirrhosis.
I fall under the cryptogenic cirrhosis category, although my Meld score was 25, but perhaps that had fallen at the time of transplant.
This is really helpful ,thank you, rodeojoe. I understood from my fellow-patient at Kings, who was pre-transplant when I last spoke to him, that they were also specifically prioritising subjects with pre-existing conditions that can be generated or exacerbated by immuno-suppressants (in his case HBP).
HBP - High Blood Pressure? Yes that sounds reasonable. But I think they are keen to recruit as in a year I'm only aware of 2 other patients. So anyone the fitting criteria should be ok.
High blood pressure is a symptom of liver disease, mine was high and went to normal after transplant. But yes Immuno-suppressants can raise it again post transplant.
Interesting that they seem to be struggling to recruit. I can appreciate that its cutting-edge nature might put some people off, but equally the potential gains in terms of reducing propensity to various serious conditions is very attractive.
Yes, the impression I got was that it wasn't the case that people were put off but that the right candidates were hard to find. I've not heard of anyone else on this forum who has been asked to partake. HCV or Auto-Immune disease patients are not suitable for the trial. That includes auto-immune diseases like rheumatoid arthritis. Interestingly though I do have an auto-immune disease (Coeliac Disease) but because this can be controlled by diet it was considered ok.
Apparently you don't have to "have" a disease like rheumatoid arthritis, but if you show the genetic markers for it then you are likely to develop it at some stage.
Ok, thanks. I was transplanted last December (which I'm assuming pre-dates the trial), and in any event was an HCV patient, so would not have qualified. It's all good, nonetheless, as they (somewhat incredibly) agreed to transplant me when I was only 8 weeks into my 12 week post-treatment clearance assessment period. New livers infected by HCV can move to HCC within a fairly short space of time, so Kings were taking a significant risk, but thankfully I cleared successfully, forever!
No it didn't pre-date the trials as I was transplanted last November (2014). Sounds like there must have been a few weeks between me leaving and you arriving. I've just finished my part of the trial, as I'm now a year in.
I don't know the reasons for HCV patients being not suitable, but for auto-immune diseases it kind of makes sense to me, after all they're testing out the auto-immune system.
Glad you're doing well. Kings have been brilliant to me. Of course I owe them my life.
Seems like we narrowly avoided meeting on the ward! Ditto re Kings. I have immense respect for Kosh Agarwal in particular, who I always find to be very direct and straightforward in his communications.
I agree about direct and straightforward. There's no excuse for not being clear after a meeting with him. Scared the life out of me on a number of occasions, reminding me the chances of dying on the waiting list. And took a very dim view of me laying on the hospital bed, so I pulled myself up and started marching round the hospital and the local parks for most of my assessment.
Basically "we're not helping you unless you help yourself".
An attitude which, in purely therapeutic terms, seems fair enough, I guess. I think he views recovery as a contract - the hospital provides the treatment, the patient enhances its likelihood of success by (in my case), never smoking, doing the physio, etc.
I agree. Because of the trial I also spent a lot of time with another Dr. He was like the good cop to Agarwal's bad cop.
Pre-op, I had had a lively debate with Kosh about an aspect of my care, which was fully resolved after a free and frank discussion. He later took a few minutes out of his schedule to visit me post-op on ward, both to remind me what Kings had done for me (which was of course to save my life) and to wish me well. He has panache!
You got told 
He reminded me I at least owed him a box of chocolates. Not a bad deal I thought.
He, he, I did. Box of Thornton's for a liver - seems fair to me! 
It's interesting though. Being in hospital with a serious condition, you have to change your expectations.
You get used to just waiting for hours, then the consultant being pulled away for something more serious. Or told one thing then something else happens. But I made a decision that if I pulled the "I've been waiting hours" attitude I probably wasn't going to get favourable treatment, so would be shooting myself in the foot.
But Kosh is something else. He seemed to fly into my hospital room, drop a bomb on me then fly out. You're sort of left angry, not necessarily with him, but after all he's the one that gave it to you like he's telling you what's on the menu for dinner.
It took some getting used to but it's his style.
I found the general experience of powerlessness in hospital very difficult to cope with - as you say, entirely contingent on other people for (initially at least) everything, including the disposal of body waste. I will obviously be grateful until my last breath for what the NHS did for me, but that gratitude shouldn't necessarily preclude criticism - the discharge process in particular is often very drawn out and unnecessarily stressful. Kosh struck me as a funny mix - utterly committed to his role in saving, prolonging, and enhancing the quality of life, but equally aware of his own importance, and aware that he could ruffle feathers....
He see's different patients every day and breaks the same bad news to them. I think it would be only natural to become somewhat desensitised.
Absolutely.
And I agree about the discharge process. It's always the same and really frustrating. However I think the reason for this is that a consultant always has to sign you out. That being at the bottom of the list of their priorities again leaves you wondering if you're ever going to leave.
Yes, indeed, and sometimes harmonising matters with the pharmacist seems to cause problems.
When I was in, there was apparently a staff consultation taking place about how to coordinate the process better. I fear though that the problem does ultimately lie where you identify it.
This speaks to a whole wider issue regarding the relationship between consultants and the NHS 'machine', whose terms (and associated problems) were set when the NHS was founded - think Nye Bevan, who "stuffed their mouths with gold" etc.
Right, I had to look that up. I think it's fair to say that they do take home a tidy some. However if I'm honest no amount of money would get me to do his job, the responsibility would be overwhelming. That's perhaps why it requires a person with certain attributes.
That said I'm probably also not qualified
There is a shortcut to the trial ukctg.nihr.ac.uk/trials/tri...
I think my wife's consultant is one of the research leaders on this topic. Kings have some research in developing a test to look for specific bio markers that can identify people that could handle withdrawal of inmunosuppression. Sadly for my wife (young female) she has a very strong immune system and probably wouldn't fit the criteria!
Thanks for this, strangecarr, and that would seem to make sense. As a longer-term outcome, it would be interesting to see whether the research might be able to identify current users of immuno-suppressants who could be tapered off them, rather than kept on them for life. I am a year post-transplant and, in medical terms at least (!), relatively young at 52, so I have a vested interest in this, in terms of reducing susceptibility to the various nasty conditions that can result from long-term use.
Yes my wife was 31 when she had her transplant a year ago. Hoping that medical advances in the future will mean less reliance on meds. She's already had CMV twice due to over immunosuppression, and 4 episodes of rejection due to under immunosuppression. 5 readmissions in a year.... In the future, I imagine it will be a lot more 'personalised' and targeted towards exactly what the body needs. Probably based on at home tests that the patient does themselves and the computer tells them what to take that day/week etc. 'point of care diagnostics' is a massive area with huge amounts of research so here's hoping...
Really sorry to hear of your wife's travails - please pass on my sympathy/empathy. This makes me realise how fortunate I have been thus far, a year in. One short phase of renal pain and a period of what appeared to be incipient prostatitis - both now resolved, the former being directly linked to dosage.
I was disappointed that, even allowing for understandable practitioner weariness with Dr Google-conversant patients, my concerns about renal damage being related to (excess) tacrolimus were somewhat dismissed, and the problem attributed to an unidentified and unspecified kidney infection.
It would be great, as you say, if we could move to a more personalised medication management regime, with a greater degree of patient control.
A medical professionals responsibility
PBC Diagnosed and Medication.
Effects of Cirrhosis on my life, Medical records not to mention my health :-(
NHS funded medical trials
Medication confusion!
