Deer Antler Velvet?

A major issue with those of us living with a disease that does not have a treatment or cure is some of us become desperate. We read about something that works for another similar disease, or is advertised that it works in building muscle, and we think, “Why not give it a try?”

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 …

Dutasteride and ASC-J9 Updates

Time flies! It is hard to believe it has been seven months since I started taking dutasteride.

I was reviewing my journal this weekend. I averaged 108 minutes of exercise every other day. The average time was down slightly because of a trip and a visitor on two occasions where I had to end the workouts early.

I still have not experienced any negative side effects.

Worth noting was that several times over the last month I commented that I had a very strong workout and I could have performed many more reps because I wasn’t tired.

Even more important in my opinion are my comments about the sustained energy level that I continue to experience. For most of us with Kennedy’s Disease, the ups and downs we experience in energy are frustrating. I have just not had any ‘down’ days. For me, that is worth the price of admission.
 

Other News:

ASC-J9

NIH is testing the oral version of ASC-J9 on small animals. I have written about this possible treatment in several articles (see below).  J9 provides a lot of hope. It will be many months before the results are known, but I am keeping my fingers crossed.
 
Other articles that refer to ASC-J9:

• Ginger, Curry May Offer Cure to Kennedys Disease
• Research News from the KDA Conference
• A Chat with Dr. J. Paul Taylor – Part II
• Good News on the Research Front
• ASC-J9 ameliorates spinal and bulbar muscular atrophy phenotype
• Curcumin / ASC-J9 / Curcumol