I got a chance to sit down and read the articles on clinical trials in the latest issue of PKD Progress magazine. It was certainly a worthwhile read. There were three informative articles. One described the process of clinical trials in general. Another described the two most promising current studies, HALT PKD and TEMPO 3/4 (Tolvaptan). A third related personal stories of people's involvement in these clinical trials.
The TEMPO trial is the one everyone seems to be getting most excited about. It appears that Tolvaptan holds the greatest promise of getting a drug on the market to treat PKD in the near future. However, I understand that people who are on the drug tend to be always thirsty and also require frequent trips to the bathroom, so it is not without some downside.
Now, I suppose if your PKD has progressed to the state that the cysts are causing discomfort and your kidney function is being impacted, you might not care much about having to deal with these side effects. But, what if you are still relatively young, you get diagnosed with PKD, but really don't have much cyst growth and are experiencing good kidney function? Would it be recommended to go on the drug anyway to increase the chances that you will never experience end-stage kidney failure? Or would it be recommended to wait until the cysts had progressed far enough along that kidney failure was more of a certainty? Since about 1/2 of PKD patients don't experience kidney failure, maybe by taking the drug, you could actually be decreasing your quality of life compared to not taking it.
I wonder about this as I think about the future for my children. Right now, the decision about whether or not they should get tested for PKD seems pretty straightforward. If a test were to determine they had PKD, it could be endangering their future insurability, but we really wouldn't be able to do much in terms of treating the PKD. Therefore, as long as there are no symptoms, there appears to be no reason to be proactive in finding out for sure. But, if Tolvaptan (or some other drug) were to become a treatment option, this decision would get more complicated.
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Thanks for reminding me about the PKD Progress. I stacked it with a variety of other magazines I received to read when I got a chance, and forgot about it. I will make a point to pull it out and read the comments about the drug trials.
I did briefly read part of it earlier to see if I might be a candidate for the program, but if I understand it correctly, I do not meet the inclusion criteria. I will confirm that with my doctor if I can ever get an appointment scheduled. (They keep putting me off for more urgent patients.)
I agree with you though, if a program does become available that offers preventative help, then it may become more important to begin testing.
Margaret
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