Thursday, February 10, 2011

I'm going to be a guinea pig

Okay, it is a done deal.  My doctor has agreed to let me try dutasteride to see if it will work.  I will pick up the prescription tomorrow.  I plan on keeping track of any positive and negative experiences and will report to you occasionally on my findings.

guinea pig

Unfortunately, since there is no generic substitute, it is expensive.  However, if it could slow the progression or improve my strength, it would be worth it.

For several years I have taken a ‘wait and see’ attitude.  This is my first venture into the world of potential treatments.

My logic appears to be sound (or desperate). 
  • Since there is not clinical trial on the near horizon.
  • And, if, on average, we lose 2% of our strength each year. 
  • And, if, on average, the clinical trial group taking the drug did see a 2% improvement in strength. 
  • And, if I do not experience any negative side-effects.
  • And, if I am one of the fortunate ones that the drug works on. 
  • Then, it is a win for me!
That is a lot of ‘if's’, but very few things are a certainty in life.

It appears, from reading the clinical trial results, that the ‘worst case’ scenario would be that dutasteride does not work for me.  It would be disappointing news, but I least I gave it my best shot.  Only time will tell and it appears that time is what is needed to truly test the drug.


  1. Avodart/Dutesteride is not really expensive - between $1 and $2 per day. I pay $25 for a 90 day supply on my drug plan.

    I firmly believe Avodart has helped me. I was down to half time at work several years ago and was considering retiring on disability. I gave Avodart a try and went back to full time and I have been there ever since. (Of course it could have been the dismal retirement/SDI income I was looking at!)

    I'm basically an office worker so don't get me wrong, I'm not out jogging. I'm currently using a power chair full time. But I do believe the progression of KD has been slowed.

    The side effects of Avodart are almost identical to KD symptoms so I don't consider them a downside.

    Since Avodart has been on the market for years addressing BHP a new clinical trail is not needed for safety.

    While the Avodart trial for KD done awhile back didn't return dramatic results I chalk that up more to the nature of KD. Changes are just too slow to get a scientific handle on the impacts of Avodart.

    But anecdotally it worked for me! I'm looking forward to ASC-J9 and hoping it may doing an even better job.

  2. Bob, thanks for your personal update. I am anxious to give it a try.

  3. Bruce - Very best wishes for Dutasteride! I have just been treated for prostrate problems (not serious) and I planted the suggestion for Dutasteride with the Urulogist and he has prescribed it. So another guinea pig. I am 62 with KD and thankfully still relatively mobile. By the way has the full paper of the trial been published? It would be nice to see the detail as well as the abstract. Anyway, will keep you posted on progress.

  4. John, thanks for your comments. I have a copy of the actual report on dutasteride. Send me your email address (in the right column under "About the Author" and I will send you the PDF file.

  5. I wish you the best of luck. It is because of you and all the other brave men and women out there that we have treatments and cures for so many devastating diseases. Thank you Your Daughter

  6. Bruce, As suggested in your blog response I would appreciate if you could send me the full report on the Dutasteride trial.

    Many thanks and your continued work on supporting KD sufferers is really appreciated.


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