Well, there are plenty of reasons to ‘not give it a try’. The drug or concoction is not always safe or proven to work. It could also be dangerous, especially if we are not aware of the dosage. Finally, what other problems (side effects) might it cause?
The last few years IGF-1 for muscles and ASC-J9 are two drugs that have been discussed by researchers as having a potential benefit for Kennedy’s Disease (SBMA or Spinal Bulbar Muscular Atrophy). They are both currently being tested with small mammals. One of the big issues with both drugs is how to decide upon a dosage that will work, but will do no harm. And, if it does work, another issue is how to make the drug available (injection, pill, IV, etc.) and convenient.
Another issue with those of us living with Kennedy’s Disease concerns the mutation in our DNA. Some drugs will not help, and could possibly do more harm, because of this defect.
Recently, several articles have been published about athletes taking a banned substance called IGF-1 or a supplement made from deer antler velvet. The athletes are using the drug to improve their strength (in other words, cheating). Several people with Kennedy’s Disease have asked about using IGF-1 that you can by over the internet or in a foreign country.
We consulted with a member of the KDA’s Scientific Review Board concerning the IGF-1 you can buy over the internet. We received the following reply: “I do not recommend the sublingual IGF-1 advertised on the internet site you sent. The IGF-1 (being test) in mice and the IGF-1 currently approved for human use are only available by injection, and neither has yet been shown to be safe and effective in KD patients.”
Being someone who is not getting any younger, I understand the lure of a potential treatment for Kennedy’s Disease. I also realize that patience is a virtue. NIH is testing both the drugs mentioned above. Hopefully there will be a clinical trial for one or both in the next couple of years. If and when it does become available for human use, it will be safe and effective.
… PATIENCE PLEASE …