Tuesday, January 18, 2011

Dutasteride Clinical Trial; Another perspective on the

The official summary report of the Dutasteride clinical trial came out this month.  It is an interesting report.  Since the original report came out over a year ago, there has been a lot of discussion from those who were in the trial on whether to continue taking Dutasteride since there appears to be no side effects and an upside benefit potential.


With this latest report, the emails have been flying back and forth about this subject again.  Several who have taken dutasteride commented that they saw an improvement in strength.  The report also reflects a small improvement in the dutasteride group versus the placebo group.  Since I am of the believe that any slowing in the progression is a win … especially at my age, I might be ready to discuss this subject with my doctor.

The section of the report on “Findings” gives me hope.  “At 24 months, the placebo group showed a decrease of 4·5% from baseline in weight-scaled muscle strength as indicated by QMA, and the dutasteride group had an increase in strength of 1·3%; the difference between groups (5·8%, 95% CI -5·9 to 17·6; p=0·28) was not significant.”   I recognize that researchers are looking for significant evidence of improvement while I am just looking for any improvement at all, or a lessoning of the progression. 

Also interesting was, “Quality of life, as measured by the physical component summary of the Medical Outcomes Study 36-item Short Form version 2, favored dutasteride (change in score from baseline: placebo, -3·6%, vs dutasteride, +2·1%; p=0·01), whereas the mental component summary favored placebo (3·3%vs -3·2%; p=0·03). The dutasteride group had fewer patients reporting falls than did the placebo group (9 vs 16; p=0·048); there were no other significant differences in reported adverse events.”

The interpretation of the trial from a researcher’s perspective reads, “Our study did not show a significant effect of dutasteride on the progression of muscle weakness in SBMA, although there were secondary indications of both positive and negative effects compared with placebo. A longer trial duration or larger number of patients might be needed to show an effect on disease progression. Performance testing, QMA, and quality of life measures were identified as potentially useful endpoints for future therapeutic trials.”


As a result of the recent emails of those who were or continue to take Dutasteride, and the rereading of the report, I am ready to discuss this potential opportunity with my doctor.  I am not one to start taking just any drug or therapy with hopes that it will help.  I am especially concerned about those individuals that will try anything without it being properly tested and approved.  At the same time, I do not want to “look a gift horse in the mouth” either.  It appears that the worst case scenario is I find out that it does not work for me.

If any of you were involved in the trial and were taking Dutasteride, I would be interested in your thoughts on the subject.  Did you have any side effects?  Did you notice any benefit?  Are you still taking dutasteride today?


  1. My family and I have been reading your blog. Thank you so much for sharing your thoughts and insights with us. It's been very helpful, educational and encouraging!

    My father was diagnosed with Kennedy's Disease in 1996. He has been under the care of a physician in Taiwan (where he resides) and has been taking several medications to treat the symptoms. After reading an article about Dutasteride and discussing with his doctor in Taiwan last year, he started taking Dutasteride 0.5mg, once a day. He was also taking Methyltestosterone, 10 mg, at the same time. He thought Methyltestosterone has been helpful to him that his facial muscle seems more "balanced," and his body muscle doesn't tingle as much at night while he was sleeping. He didn't feel much difference/improvement while taking Dutasteride, and didn't feel any side effect. He wasn't sure if it wasn't the right dosage, or it just didn't do much to him. Therefore, he stopped taking Dutasteride after trying it for three months. (Maybe he needed to stay on it for a longer period of time...) Anyway, he's still taking Methyltestosterone.

    After reading " Dutasteride Clinical Trial" on your blog on Jan. 18th 2011, he's been reconsidering taking Dutasteride again. There aren't clinical trials in Taiwan. Usually doctor receives medical information from US, and then tries making an judgments on what medication to prescribe.

    How does one get on a clinical trial, for instance, the Dutasteride Clinical Trial, here in US? Do you know anyone who is on that trial, or any trial related to KD here in US? If yes, do you know what is the dosage people take for Dutasteride in the Dutasteride Trial? In your blog, you mentioned you are ready to discuss the possibility with your doctor about Dutasteride. Can you share your doctor's opinion on this with us?

    Please forgive me for asking many questions. Thanks a lot for your time and thank you for being truly inspirational.

  2. Sorry it has taken so long for me to respond. For some reason your comment ended up in the SPAM folder and I just saw it today.

    If you are following my blog, then you know that I am now taking dutasteride. You can download a PDF report on the actual trial at this link: http://www.kennedysdisease.org/promote-research/clinical-trials .

    My doctor was fine with me trying dutasteride after I provided him with the actual report and a couple of emails from a member of the KDA's Scientific Review Board. The dosage is 0.5 mg per day.

    Ref. how one gets into a clinical trial, the KDA publishes information on any pending trial that it is made aware of. We work closely with NIH to provide our associates with the most current information on any trials.

    Yes, I know several men who participated in the trial and have spoke with a few of them personally.

    If you have additional questions, please let me know.


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