Saturday, June 5, 2010

A Remedy for Kennedy’s Disease?

This week I received an email from a board member that had a link to Patients.com.  The site contained information about a patent that was issued June 1, 2010 for "Methods for treating spinal and bulbar muscular atrophy using LHRH analogs." Of course, my blood pressure immediately rose several points and my anticipation grew as I sifted through the pages and pages of medical terminology, references, claims and descriptions trying to find out whether there really was a remedy for Kennedy's Disease. 
The first inkling I got that this was not what I was hoping it was came in the first few lines. The filing date was September, 2006. Something that old would have hit our radar far before this if it were a treatment. My second clue came when I read the doctors involved and the actual treatment. We, meaning the KDA, have been following three clinical trials in Japan for several years using Leuprorelin as a method of chemical castration. 


When I first heard of the clinical trials, I was interested until I began reading up on the drug. What caught my attention was the "C" word ... it always causing my body to cringe. Being an optimist at heard, I decided to see how the trials went before judging the drug just because of the connotation it represented.

One of the more common uses of Leuprorelin is in treating prostate cancer. Long-term use of the drug acts on the pituitary gland in the brain causing it to shut down the production of testosterone and possibly other hormones. Since some prostate cancers grow more rapidly because of testosterone, Leuprorelin reduces the level of testosterone causing the cancer to stop growing and potentially shrink. 
 
Potential side effects are many including:

  • Pain and irritation at the injection site.
  • Headache.
  • Difficulty in sleeping (insomnia).
  • Hot flushes.
  • Dizziness.
  • Swelling of the legs and ankles due to excess fluid retention (peripheral oedema).
  • Weight changes.
  • Decreased sex drive.
  • Fatigue.
  • Disturbances of the gut such as nausea, vomiting, diarrhoea or abdominal pain.
  • Pain in the muscles and joints.
  • Visual disturbances.
  • Pins and needles (paraesthesia).
  • Awareness of your heartbeat (palpitations).
  • Changes in blood pressure.
  • Worsening of depression.
  • Decrease in the number of white blood cells in the blood (leucopenia).
  • Blood clot in the lungs (pulmonary embolism).
  • Decreased bone density.

Specific side effects in men could include:

  • Impotence.
  • Abnormal enlargement of the breasts (gynaecomastia).
  • Sweating.
Since I was already experiencing several of these symptoms, I wondered how much worse it could get.

Back to the patent ... from my understanding, the results of the trials were neither positive nor negative. In some ways, I breathed a sigh of relief. However, in another way, I was still disappointed. Knowing that there is a possible treatment still causes a level of excitement similar to that when I am first strapped into the rollercoaster at Magic Mountain.

After digesting the patent information, I contacted Dr. Fischbeck at NIH and asked for his opinion. His understanding of the clinical trials was similar to mine. However, he planned to contact one of the researchers involved and hoped to gain a better explanation. When I learn more, I will post a follow-up article. For now, I am back to 127 over 78 and breathing normally again.

1 comment:

  1. my partner is still in the process of being diagnosed with KD, blood results back today still show maasively high muscle wastage, liver function tests have failed (again) slight tremor on left arm, decreased sensory down left side, man breasts have always been large and calf muscles are also being mentioned as a symptom of KD. Both his 1st male cousins have had breast reduction surgery in their 20's, his grandfather was diagnosed with KD shortly before he died of old age (91), his Aunts have all gone to be tested to see if they are carriers and their children are also now starting the process of testing for either being carriers or affected..my partner is just 40 and all this started because he has neck sryinx and had to have blood tests which he failed twice...is there anything dietry or whatever that i can do to lessen the onset of KD or make him feel better because he feels he's been given a 'life sentence' and wont live long if he is diagnosed with it in the next few weeks (plus he'll lose his job which will only add to the spiral of depression) please can someone suggest something? we live in the U.K..

    ReplyDelete

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