Does anyone have any experience of Lyprolex (Leuproleline) which I gather is a hormone that combats the build up the testosterone in the muscles? I think KDA has details of an animal test conducted a long time ago.
I have recently transferred to a new specialist in a new country who recommends it (he says it is in common usage in Japan & US) My former specialist for whatever reason did not mention it. It is very expensive with each quarterly injection costing upwards of $400 and I have no idea whether there is any proven or experiential evidence of benefits. I am even concerned it could be harmful. Above all, I am reluctant to spend that money on something that is only speculative.
Any comments would be welcome.
04-29-2015, 12:09 AM
Luprolex (not lyprolex) is an overseas brand name for luprorelin (international name) or leuprolide (U.S. Adopted Name). It works by affecting the pituitary gland to dramatically reduce the amount of testosterone (in men) or estrogen (in women) in the body.
It is NOT FDA-approved for Kennedy's Disease, and it is NOT recommended for KD by any doctors of whom I am aware. The statement you attributed to your doctor ("he says it is in common usage in Japan & US") is NOT true. Furthermore, the drug will dramatically reduce the amount of testosterone in the body, which will result in significant side effects. I would not consider using luprolex, luprorelin, or leuprolide unless it was closely supervised by a skilled and reputable neurologist or endocrinologist.
04-29-2015, 11:08 PM
Dan That was a very helpful response indeed. It not only explained how it works and the different versions of the name but most importantly some very clear indications of the cons of its use. I'm glad I sounded it out on the KDA forum before trying it. I am not going to try it now. Thank you so much for your most helpful response
05-01-2015, 04:13 PM
After some additional pondering, I just wanted to clarify that I didn't intend to condemn totally the idea of trying luprorelin/leuprolide. There was a 2003 scientific paper showing some benefit of luprorelin in a mouse model of Kennedy's Disease (details at http://kennedysdisease.org/ima...PDFs/leuprorelin.pdf ).
The studies of leuprorelin/leuprolide in humans showed no benefit, but that could be due to the fact that the progress of KD in humans is so slow that it is difficult to tell if the drug is working or not. For example, the first study linked above tested leuprorelin for 48 weeks. Perhaps a longer study would have shown some benefit.
I didn't intend to say that one should avoid leuprolide/leuprorelin totally. I did intend to say:
These drugs aren't recommended for KD by any doctor I know of, nor the researchers who spoke at the KDA conference, and
if considering an experimental and unapproved drug such as these, you should make sure to work with an experienced physician.This message has been edited. Last edited by: Dan B,