Kennedy's Disease / Spinal and Bulbar Muscular Atrophy

[iwontgiveup]

@Mew

What’s your point? And why is this posted in the “Theories” section?

i was getting to that. I have been looking up CAG repeats and stuff. basically this disease is something that doesnt rear its head until later in life. from what i have been reading it starts off/worsens when testosterone hits the androgen receptors. usually shows up mid 30s-40s. what if we have this disease and we kick started by suppressing the 5AR and building up too much testosterone. its a horrible possiblity but one none the less that would help explain our symptoms and it seems easy enough to test for to confirm or rule out.

further, there are researchers for this right now that are working on studying AR mutations and perhaps we could reach out to them regarding our situation!?

also if i am reading this right it looks like she was able to curb off the effects of the mutation with IGF-1

isnt that the point of the “theories” section?

[Luckfax]

I was worried I was getting Kennedys or some other androgen receptor disease at the beginning with my muscle loss and shrinkage, neuro seemed to rule it out. I thought you’d seen a neuro?

[golf]

How did he rule this out? A nerve conduction test?

[Luckfax]

I don’t think so, he made me walk about and did that thing where they hit your knee for a reflex. He probably did a couple of other things I’ve forgotten about. He was cool and believed my story but said it would ‘flush out of my system’ then referred me on to an endo. No EMG testing or whatever it was that mew got.

[iwontgiveup]

@Luckfax

I was worried I was getting Kennedys or some other androgen receptor disease at the beginning with my muscle loss and shrinkage, neuro seemed to rule it out. I thought you’d seen a neuro?

I did see a Neuro but who knows what she is thinking

[iwontgiveup]

soemthing else of note. i remember that JN had gotten much better with HGH which increases IGF-1

[tim1911]

Its your theory, so prove it right or wrong or youre wasting everyones time

[iwontgiveup]

@tim1911983

Its your theory, so prove it right or wrong or youre wasting everyones time

haha ordering right now buddy its open in the other tab right now - by the way im hoping for the love of GOD that this ISNT what we have this would be aweful. a disease that makes your AR not work and the more testosterone you give it the worse it gets

[golf]

thank you for doing that wontgiveup

[iwontgiveup]

@golf17331

thank you for doing that wontgiveup

no worries! whats another hundred bucks at this point

[iwontgiveup]

mda.org/publications/Quest/e … /sbma.html

Mice with an SBMA-like disease benefited from extra IGF1 genes in their muscle fibers

Note: “LIKE-disease” even if we dont have this disease… this wasnt the exact thing either but IGF1 helped

[tim1911]

@iwontgiveup

@tim1911983

Its your theory, so prove it right or wrong or youre wasting everyones time

haha ordering right now buddy its open in the other tab right now - by the way im hoping for the love of GOD that this ISNT what we have this would be aweful. a disease that makes your AR not work and the more testosterone you give it the worse it gets

Nice one bud,

[golf]

Got tested for this this morning via an emg and nerve conduction test - which let me tell you is not pleasant (they stick needles in your muscles and move them around) and it was 100 percent normal.

[Luckfax]

Have you had any muscle loss/twitches?

[bluecloud87]

Guys, do you know dutasteride is Kennedy Disease patients miracle drug?

Maybe we suffer something similar, in that andorgens/ dht are harmful for us ever since they returned when dropping finasteride

[Mew]

Guys, do you know dutasteride is Kennedy Disease patients miracle drug?

Post links to info regarding this to elaborate further please.

[bluecloud87]

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? i am not trying to put forward a serious theory here, simply writing down some thoughts. I am most interested in there use of dutasteride.

I think Blase is onto something when he talks about DHT being pro inflammatory in some cases. The ‘crash’ event makes me think we had/ are having a bad reaction to DHT since we stopped suppressing it by 70% using finasteride.

“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.”

[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.