Hello everyone. I hope health and happiness is finding everyone this summer. I was wondering if anyone has taken steroids and if so what kind, what dosage, what are the positive affects and what, if any, were the negative affects?

Thanks...Dan

My understanding is that testosterone exposure is what brings on the cell damage that results in KD; taking steroids means increasing the level of testosterone and increasing the rate of the disease.

Dear Dan -

I tried an androgen-steroid patch about 2yrs ago. Before initiating the therapy I had a chat with an endocrinologist regarding my concerns that testosterone[T] might actually accelerate the disease process. As I understand it - somewhere along the line T is converted to the dihydro form [dhT] which is more tightly bound by the adrogen receptor[Ar}. If you suddenly increase the concentration of reactive steroid - nature will move in a direction that will push more of dhT-Ar complex into the nucleus that eventually activates the gene and messenger RNA which carries the instructions for the proteins needed to form AR. In turn this will lead to the malformed proteins [because of the excessive CAG units] which apparently cleave leading to aggregate formation. Because T is also a component of more complex endocrine cycles - the intial result maybe that that the steriod treatment is indeed beneficial. But eventually it must fail if the current research has been correctly interpreted. After the initial induction period is over is when one might expect problems. The following is an accouint of my experience:

Initially I felt a pick-up in mood. Appetite increased without significant weight gain. Lost body hair began to return along with a small, but noticeable improvement in general strenght, libido, balance and semen production. Sometime around the 4th week I didn't feel quite right. Attitude became more anxious, breathing was stressed and enchanced weakness was noticeably evident. A week or so later I woke up in the middle of the night needing to urinate - I could barely stand-up and my breathing was shallow. I thought that's it and I removed the patch. Within 4 or 5 hours I began to feel better and breathing became normal. All of the intial benefits disappeared with a few weeks. The researchers who have been advocating anti-androgen therapy as one possible treatment are on the right track. If anyone wants to try androgen therapy - proceed with extreme caution and talk with a competent endocrinologist or internist who's knows something about SBMA. I was stubborn and wanted to try it -so I am equally at fault.

Sorry I didn't intend this to be quite so long.

Keith

Keith, thanks for sharing your experiences. It is important that we all understand what is available, what we are trying, and the potential benefits/risks.