One of the worst threats to the survival of kidney transplants is the toxicity to the kidneys of cyclosporine. Many scientific studies have shown that the amino acid arginine, which is widely available as a supplement, can prevent graft loss due to cyclosporine toxicity. However, a study in using arginine and cyclosporine in rats which was published in 2010 showed that arginine interferes with the immunosuppressive action of cyclosporine, which throws the whole idea of using arginine to block cyclosporine toxicity into question. I wrote to the lead author of that study who said that since the rat liver is different from the human liver, the results found in his study might not translate to human patients, but since then apparently no studies have been performed on this vital question. Does anyone have any new information on this life-saving intervention, or has anyone tried arginine supplements and survived to tell the tale?
Ways to Reduce Cyclosporine Toxicity - Kidney Transplant...
Ways to Reduce Cyclosporine Toxicity
I have been on Sandimmune for 32 years. An article written about a rat study eight years ago is nothing to hang your hat on. Classic treatment for cyclosporine toxicity is early detection with early reduction of dosage. If that is not indicated then conversion to celcept and prograf is indicated. All of this is strictly initiated and monitored by a Nephrologist. There are no immunosuppressive drugs on the market that are not potentially nephrotoxic so constant periodic monitoring by a Nephrologist is essential for kidney transplant health. I have been seen by a Nephrologist every three months with cyclosporine levels drawn prior to my Nephrologists visit. That is part of the reason my kidney has lasted this long. Relying on anything other then professional monitoring is dangerous and contraindicated. Cyclosporine is not a front line immunosuppressive and has been essentially replaced by cellcept and Prograf. If you are on Cyclosporine then you need to be under close supervision of a Nephrologist and discussion of any supplements should be with that medically trained professional. No one on this site has the background to to discuss supplements that should be between your Nephrologist and you. I wish you well and hope that others on this site and reading this accept the fact that medical decisions after transplant are between you and your Nephrologist.
There are many articles now about the stagnation of medical progress, which set in, according to various authors, around 1984. The last real victory of modern medicine was over polio in the early 1950s, which points to its miraculously slow advance compared to other sciences over the past 60 years. If space travel and computer science had advanced as slowly as medicine has over that period, those fields would hardly exist. For my part, I don't intend to be a victim of that catastrophic stagnation, which has been produced largely by the ultra-conservatism and lack of imagination of the profession, which grows wealthy by monopolizing healthcare and so strictly disciplining it that true competition of ideas producing significant advances becomes impossible. When I have serious discussions about new research in the field with my nephrologists I find that they can't even pronounce the names of the medicines or chemicals I'm talking about, because unlike me, they are not doing ANY research at all in their own subject. Why should I allow their limited knowledge to limit my life? Of course I know all the 'now now now, be a good boy and do what your doctor says' propaganda, but long experience with doctors tells me that they are neither very smart nor as interested in saving my life as I am.
I am a survivor living with a disease process that is both progressive and lethal. I have seen very little in the way of progress towards a cure for Nephrotic Syndrome. I chose a path of being a good boy and the results are evident. I will not debate you on this forum but encourage you to go forward with your own beliefs. Please let everyone know how it works out for you over the next 30 years.
It is important to understand the difference between the scientific and the existential perspective. From a scientific perspective or a population-based perspective, it would be useful to ensure that every action is fully tested for safety and effectiveness before it is attempted, even if this takes another 30 to 40 years, as the incredibly slow and ultra-conservative processes of modern medicine are, utterly stifled as they are by the Foot Dragging Administration (the FDA).
But viewing the situation existentially, I find my life threatened by a recipe for failure stupidly applied and reapplied with no imagination by professionals who are rewarded for repeating the existing approaches even though they are known to be imperfect. Since I am living here and now, I cannot be content to wait 40 years for something perfect, and I can see that those the medical monopoly places in charge of my care have little or no interest in trying anything new or thinking outside the box. They will get rich and gain professional respect by applying treatments they know do not work adequately, while I will predictably be returned to the living death of dialysis. Since those in charge of me and I do not have the same view of the situation, I cannot just follow their lead. It is as though I am trapped in a burning building and considering whether to jump out the window to save myself, but I don't know how far it is to the ground and it will take 40 years of testing to determine the height of my fall, but the flames are already licking my feet. The right thing to do in this situation is not what is scientifically right.
Renadyl, an alternative medicine backed by peer-reviewed studies, has already reduced by creatinine level by about 10, but my nephrologists have never heard ot it. Was it a mistake to take it, or should I confine my chances to the ignorance and prejudice of the medical system I find myself in? Kremazin is automatically used by nephrologists in Japan for patients threatened with dialysis, and it has been found to delay their decline to dialysis by a few years, so should I just ignore it because I don't live in Japan? My doctors here have never heard of it, and I have to ask, what does that say about them? Being a nephrologist and taking care of kidney patients to the best of my ability is not my job, but it is theirs, so why do I do the necessary medical research and find treatments like this while my nephrologist just don't bother? Perhaps they could care less, since it is, after all, not their life which is at stake?
Good for you. I took Renadyl before my transplant, and it saved me from getting on dialysis. It is a shame doctors don't do research, like you said.
Thanks for your comment. I am now also taking N-acetyl-L-Cysteine and Cordyceps which are both used in other countries alongside Cyclosporine to diminish the toxicity of Cyclosporine on the renal graft. Another possible adjunctive therapy I am considering is Chitosan, which is essentially the substance of which shrimp shells are composed, and which has been found to preserve renal function against toxic stress. I have read some accounts which seem to suggest that it may increase Cyclosporine to toxic levels, but when I asked my friendly pharmacist to read those articles, he said that Chitosan in its unmodified form, in which I will take it, would not in fact alter the Cyclosporine absorption. Since I want to approach this cautiously, however, I plan to try Chitosan supplementation only for the week before the next transplant blood work follow-up when I can check to ensure that it is not elevating Cyclosporine levels.
My brother is an acupuncturist. He had me on Cordyceps. I think it is great how you do the research to keep your kidney going. Best wishes to you.
Totally agree for them they get paid to do the usual job
Why would they care about you so much
It's the oath which they take
We swear to protect life
But seriously do they protect life in long term do they question the treatments
I have had transplant 10 years now
And also have other issues but certainly life is difficult and when I see bionic kidneys available and people don't need to take immune suppressants it makes me thing am I wrong to think about a better future for my self
Too old for transplant
Any takers?
Feeling scared about what's to come
Curious 