|
Go | New | Find | Notify | Tools | Reply |
Registered: 09-07-2009 Posts: 13 | New to the KD forum. Hate for my first post to be about a not so popular topic. Has there been any clinic trials done on the effectiveness of castration to see if it halts progression of KD humans? Haven't been able to find any research on the subject since the posting of this article at MSU 2 years ago. http://news.msu.edu/story/934/ Fisher |
Location: Pocatello, ID Registered: 05-24-2008 Posts: 109 | Fisher, another study done in 2003 posted in nature medicine (link available on KDA website) also indicated that use of the prostrate cancer drug Leuprorelin acetate, which results in chemical castration could be an effective treatment for SBMA. My neurologist and I have spoken of this option but both agree that right now it is too radical for me to try. I am not sure that at this point in time, I would volunteer for such a study. I am holding out for less extreme but equally promising treatments. Pocatello Jim |
Registered: 09-28-2005 Posts: 654 | Japanese researchers just concluded a study on Leuprorelin (chemical castration). There were a couple of somewhat positive results from the study, but nothing that could cause them to move forward and declare it a success. Dr. Fiscbeck wrote about this trial (comments below): "In early 2009, Dr. Gen Sobue's group from Nagoya, Japan, published the results of a clinical trial in KD patients with the anti-androgen drug leuprorelin. In the 48 week placebo-controlled portion of this trial there were signs that the treatment had an effect on the distribution of the mutant protein and slightly improved swallow time, although it was not clear whether the latter effect was noticeable by the patients. In a 96 week non-randomized follow-up period those patients who chose to continue taking the drug did better than those who did not, but it is possible that this was due to selection bias rather than to drug effect. A larger, multi-center trial of leuprorelin is currently underway in Japan." |
Registered: 09-07-2009 Posts: 13 | Thanks guys for your feedback. Been too busy, but I’ve been lurking around the forum keeping up with recent post. Decided to find the castration study and read their findings, which can be found here http://www.mdpi.com/1422-0067/10/3/1000/pdf. I noticed that within the study they mention the use of 'sodium butyrate' (NaB) a simple supplement providing symptomatic relief (pg 9) for KD suffers. Another study on the use of NaB posted on the ADA website outlines the benefits of NaB on energy metabolism, insulin sensitivity, skeletal muscle, mitochondrial function, histone deacetylase activity in muscle. http://diabetes.diabetesjourna...ntent/58/7/1509.full Interesting I found another study http://www.andrologyjournal.or...ontent/full/25/4/523 that mentioned that tamoxifen might be useful for men who must avoid androgens, and could be an alternative to leuprorelin without the need of castration. Any news on a SBMA IGF-1 clinical trials? |
<Bob> | Is castration different than vasectomy? |
Registered: 09-28-2005 Posts: 654 | Yup! It is called chemical castration. It basically does not allow the production of testosterone. |
<Bob> | So if you are snipped, you are not castrated? One still get testosterone? |
Registered: 09-28-2005 Posts: 654 | Bob, that is my understanding. A vasectomy just prevents sperm from entering the seminal stream (ejaculate). Castration is where a male loses the functions of the testicles. The testes producing sperm and produce male sex hormones of which testosterone is the best-known. So, one stops the flow while the other stops the production. |
Location: Arizona Registered: 10-06-2010 Posts: 108 | Wouldn't a male loose his sex drive if castrated? I suppose it wouldn't be too different than a female hysterectomy, but would a male still be able to get an erection if castrated? God is the greatest physician of all. |
Registered: 11-23-2006 Posts: 29 | A male would lose virtually all ability to get an erection and sexual desire would disappear if he were castrated, chemically or physically. There is a psychological aspect which might not disappear, but it would not be backed up with physical capability. I remember talking to a single gentleman in his late 70's/early 80's at the last KD conference, who said he did not care about remaining sexually active, but who DID care strongly about being able to walk and stay strong. Here was a good candidate. Anyone in a relationship with sexual activity should not consider castration, IMHO. |
Location: Arizona Registered: 10-06-2010 Posts: 108 | Allan, your last sentence really struck me, quote: Anyone in a relationship with sexual activity should not consider castration, IMHO. Hum, if my husband would be healthier and stronger for the rest of his life, I wouldn't mind if he got castrated. There are other ways to show love to someone, one being supportive and wanting the best for them. Would sex be missed? Absolutely, but sex does not make my husband who he is. God is the greatest physician of all. |
Registered: 09-17-2010 Posts: 56 | agree, I am just the one who in the Leuprorelin, almost 5 month, I still have the sexability, but not too much, other no change, if u like u can stop , u r sexablity will recovery after 6 month, and waiting new drug comeing out like asc-J9 |
Registered: 09-17-2010 Posts: 56 | honestly, Leuprorelin acete inject every 1 month, it work on me, side eeffect is sweeting, after 6 month, stop2 month, then inject again until new drug coming out, but the new drug coming out too sloww! |
Location: Arizona Registered: 10-06-2010 Posts: 108 | Leon, which one of us are you agreeing with? I suspect the injections affect you like a hysterectomy or menopause affects us females? God is the greatest physician of all. |
Registered: 09-17-2010 Posts: 56 | leuprorelin for men, fuction as hysterectomy, man like me 40 years old, the doc suggest me have this injection, not necesarry fully castration, give acouple injection /year no big deal, but good reduce the sexual activities , then reduce the reaction between telestone and AR, reduce the toxic protein and good for KD |
Kennedy's Disease Association
1445 Woodmont Ln NW #1805 GA 30318
Tel: 1-855-532-7762
Email: info@kennedysdisease.org