Shrink the Cysts?
Isn't there any kind of medication out there that can shrink the cysts on our kidneys? I can actually feel my cysts on …
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (...

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Tolvaptan
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http://www.clinicaltrials.gov/ct/s...
Phase III clinical trial has started enrolling for the drug Tolvaptan. It is showing that it has stopped the progression of the disease and shrinking the cysts resulting in less renal pain and discomfort. "autosomal Dominant Polycystic Kidney Disease (ADPKD) is a genetic disorder characterized by the formation of fluid-filled cysts in the kidneys. The accumulation of these cysts enlarges the kidneys, impairing renal function and may lead to renal failure requiring dialysis or transplantation. This disease can be life-threatening. Aside from early antihypertensive control and dietary protein restriction, which may offer a modest degree of protection, most surviving patients require renal replacement therapy (dialysis and transplant) and suffer from high morbidity and mortality.2 Tolvaptan is an oral vasopressin (water regulating hormone) inhibitor acting principally at the kidney cells affected by ADPKD. A rationale for use of tolvaptan in ADPKD is supported by research conducted in a variety of animal models. In these models, tolvaptan is effective in halting or reversing the progression of this renal disease. , The current study will evaluate whether tolvaptan will be potentially beneficial, while maintaining an adequate safety profile, by reducing total renal volume and other important consequences of the disease." Posted on 05/01/07, 02:05 pm |
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This sounds really good. My kidneys are still holding but not by much.
Don't want to be a downer, but, are there any side effects that you know of? Will this medication be available outside USA? Have any other countries approved it yet? Do you have any more info? Thanks and good luck!
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All I really know is it is FDA approved currently for congestive heart failure and is being prescribed....just not for PKD yet. :( I have my appt for Monday with my nephrologist and I suppose we will go from there. I am really frustrated that they do not take proportion into consideration for the study. My dr has already told me my kidneys are about as big as my body is going to let them grow...no more room. When they begin to gain volume a cyst will leak and the volume does not increase by much. I really really want this drug. I am so tired of all the pain. I will keep you all informed of what I find out. Worst case scenario is that I have to wait until it is finally approved and be put on it immediately. I just do not want to lose any more function because that is something I have going for me. Right now they work and I would like to save that.
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Good luck with your dr Barbie. I gotta get off my hinney and make an appt too. ugh I don't know what I'm waiting for. I gotta do something fast. have so much projects comin soon. Have anyone of you find that layin on tummy helps?
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I am in the trial currently - in month 12. Once you are calibrated on the medication (takes about 3 months) you only go in once a quarter for blood work, urinalysis and other tests.
I will be going in for my 2nd MRI to track the progression of the cysts (or lack of!). It is a double blind study so I may be getting a placebo, but with the side effects that started on day 1 my study coordinator thinks I'm getting Tolvaptan. I am constantly thirsty, dry mouth, pee alot (because I drink alot). This is supposed to be a 3 year trial, but if approved earlier I will get to keep taking the medication. I will look forward to the comparison MRI. My kidneys were at 1250ccs when I started. I hope they will give me information on how they have changed.
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