Kennedy's Disease / Spinal and Bulbar Muscular Atrophy

[bluecloud87]

@bluecloud87

http://kennedysdisease.blogspot.com/2011/07/dutasteride-update-five-months.html

kennedysdisease.blogspot.com/2011/09/dutasteride-and-asc-j9-updates.html

ncbi.nlm.nih.gov/pubmed/21216197

Kennedy’s disease is completely different to PFS obviously, but i think it’s interesting because it is something to do with the androgen receptor and DHT is not good for these guys. Considering so many of us ‘crashed’ when DHT probably came flooding back, you never know, maybe it is harmful for us too.

“Spinal and bulbar muscular atrophy (SBMA) or Kennedy’s disease is a slowly progressive,
X-linked motor neuron disease for which there is currently no treatment. It is caused by a
mutation in the androgen receptor that results in a polyglutamine repeat expansion. Recent
animal studies have demonstrated that decreasing endogenous androgen levels leads to
functional improvement and increased survival. Studies have also shown that high levels of
5 alpha-reductase, the enzyme that converts testosterone to the more potent
dihydrotestosterone (DHT), are present in the ventral spinal cord, while low levels of this
enzyme are found within skeletal muscle. Thus, by selectively decreasing levels of DHT with
dutasteride, a 5 alpha-reductase inhibitor, it is hypothesized that there will be a
selective protection of motor neurons, without the adverse effects of reducing the anabolic
effects of androgen on muscle.”

I don’t know how long you guys want to ignore the fact that 5 AR inhibitors have in cases helped PFS. I certainly am not.

[Oscar]

Efficacy and safety of dutasteride in patients with spinal and bulbar muscular atrophy: a randomised placebo-controlled trial
ncbi.nlm.nih.gov/pubmed/21216197

Our study did not show a significant effect of dutasteride on the progression of muscle weakness in SBMA, although there were secondary indications of both positive and negative effects compared with placebo. A longer trial duration or larger number of patients might be needed to show an effect on disease progression. Performance testing, QMA, and quality of life measures were identified as potentially useful endpoints for future therapeutic trials.

Phase 2 trial of leuprorelin in patients with spinal and bulbar muscular atrophy
ncbi.nlm.nih.gov/pubmed/19259967

These observations suggest that administration of leuprorelin acetate suppresses the deterioration of neuromuscular impairment in SBMA by inhibiting the toxic accumulation of mutant AR. The results of this phase 2 trial support the start of large-scale clinical trials of androgen deprivation for SBMA.

Followed by…

Efficacy and safety of leuprorelin in patients with spinal and bulbar muscular atrophy (JASMITT study): a multicentre, randomised, double-blind, placebo-controlled trial (2010)
ncbi.nlm.nih.gov/pubmed/20691641

48 weeks of treatment with leuprorelin did not show significant effects on swallowing function in patients with spinal and bulbar muscular atrophy, although it was well tolerated. Disease duration might influence the efficacy of leuprorelin and thus further clinical trials with sensitive outcome measures should be done in subpopulations of patients.

Spinal and bulbar muscular atrophy: ligand-dependent pathogenesis and therapeutic perspectives.
ncbi.nlm.nih.gov/pubmed/15133611

Leuprorelin, an LHRH agonist that reduces testosterone release from the testis, inhibits nuclear accumulation of mutant ARs, resulting in the rescue of motor dysfunction in the male transgenic mice. However, flutamide, an androgen antagonist promoting nuclear translocation of the AR, yielded no therapeutic effect

There are some interesting similarities; ‘ligand-dependent toxicity’. But anti-androgens arent used for this condition and its not a miracle drug for them - even for the person in the blog.

Can I ask bluecloud87 aka Joe-91/Uk20/sanfran55/BaldyLocks to stop lying and trying to encourage continued use of Finasteide.

[bluecloud87]

Anti androgens ARE used for this condition. Check the blog and you will see that a number of men have had very positive experiences from using Dutasteride. The term miracle drug was used rather loosely but it’s no surprise to see you taking it literally. I am not encouraging the use of 5 AR inhibitors; i am simply saying that they have helped some post finasteride sufferers. Which is a fact.

Crawl back into your little hole Oscar. Your what, 30 or something like that? and yet you are persistently bitter with people in the same dire situation as yourself. And revealing details and bald jokes? aren’t you balding and wasting away yourself? seriously, it’s about time you grew up mate.

[martinM]

@bluecloud87

I don’t know how long you guys want to ignore the fact that 5 AR inhibitors have in cases helped PFS. I certainly am not.

If you think so why don’t you continue to take finasteride? Why aren’t you on it now?

No one is trying to deny the short honeymoon period you felt while retaking the drug. However other people feel directly worse when taking 5AR inhibitors. I think we’re all more concerned about the more serious, long-term sides after discontinuing use.

[Oscar]

@bluecloud87

Anti androgens ARE used for this condition.

Provide a Link.

@bluecloud87

Check the blog and you will see that a number of men have had very positive experiences from using Dutasteride.

Provide a Link.

@bluecloud87

The term miracle drug was used rather loosely but it’s no surprise to see you taking it literally.

??? The blog and the study you have linked prove the exact opposite - it doesnt work. So what are you talking about?

@bluecloud87

I am not encouraging the use of 5 AR inhibitors; i am simply saying that they have helped some post finasteride sufferers. Which is a fact.

No its not.

@bluecloud87

Crawl back into your little hole Oscar. Your what, 30 or something like that? and yet you are persistently bitter with people in the same dire situation as yourself. And revealing details and bald jokes? aren’t you balding and wasting away yourself? seriously, it’s about time you grew up mate.

Havent you wasted years of your life posting thousands of message about your personal life all over Hairloss websites?
Havent you posted hundreds of pictures of your bald egg-head all over the web? (-Possibly more than any other human in history-)
Havent you constantly sought attention and sympathy on those websites like a total FREAK.
Now you turn up here, pretending to be ill? You’re one world-class wierdo Joe.

You have made 1000+ posts of total crap, dont invent stupid crap up just to make yourself more interesting

(p.s. Im 27)

[bluecloud87]

The links are provided in the original post to Mew. I did use the hair loss forums a lot, yes. Coincidentally, i was using them when i began taking finasteride and became depressed because of the drug. The minute i took the stuff, my life spiraled downwards. I began to over analyze everything. PS I probably look a million times better than you bald. Oscar, you are blatantly a bitter loner that has been paying far too much attention to me. It would probably do you a world of good if you focus more on your own life.

Ok, there is nothing solid on 5 AR inhibitors helping us but they have helped a number of us and i just made a link with the kennedy’s disease patients using dutasteride and giving them there lives back. The links are right there

[Oscar]

@bluecloud87

Ok, there is nothing solid on 5 AR inhibitors helping us but they have helped a number of us and i just made a link with the kennedy’s disease patients using dutasteride and giving them there lives back. The links are right there

There is no evidence I can find in the links you have provided or elsewhere of anti-androgens being a ‘miracle cure’ or ‘giving their lives back’ to men with Kennedy’s disease. Even the guy in the blog has no success. So, what are you talking about?!?

Joe, the only fool posting here about 5aR inhibitors helping IS YOU! No person truly suffering with these side-effects would ever dream of doing such a thing. Yet you claim to have already done so. Arent you just attention seeking here like you have done (for the last 5yrs) on hairloss sites?

I think everything you have ever posted is bullshite.

[bluecloud87]

You must be missing something if you can’t see that the guys on that blog had big improvements using dutasteride. I don’t know what to tell you.

Yep, a lot of the stuff i have posted probably is bullshit. You have also posted 100% bullshit.

[bryce54]

@Oscar

@bluecloud87

Ok, there is nothing solid on 5 AR inhibitors helping us but they have helped a number of us and i just made a link with the kennedy’s disease patients using dutasteride and giving them there lives back. The links are right there

There is no evidence I can find in the links you have provided or elsewhere of anti-androgens being a ‘miracle cure’ or ‘giving their lives back’ to men with Kennedy’s disease. Even the guy in the blog has no success. So, what are you talking about?!?

Joe, the only fool posting here about 5aR inhibitors helping IS YOU! No person truly suffering with these side-effects would ever dream of doing such a thing. Yet you claim to have already done so. Arent you just attention seeking here like you have done (for the last 5yrs) on hairloss sites?

I think everything you have ever posted is bullshite.

Dude, you think everything people post is bullshit as if it’s some conspiracy. I’m not trying to insult you, I’ve read your posts and a lot of what you say makes sense because you use studies to back up your thoughts and talk in a clear, concise matter. However, I really don’t think bluecloud is making up the fact that when he took a 5AR2 inhibitor, a lot of his sides cleared up. Yeah, he can sometimes post random things that he doesn’t know about (bluecloud, sometimes its true), but if he directly took a 5AR2 inhibitor and had success, there’s really not denying that, he actually took it and that was the effect.

I def. don’t recommend anyone take it, I def. wouldn’t touch that again, not sure why he did… but it’s another clue as to what’s going on.