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10/14/2010

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Steve

"I had previously written about whether the propensity of finasteride to cause lasting hypogonadism could be due to the development of partial androgen resistance and whether this relates to the number of CAG repeats in exon 1 of their androgen receptor genes."

If AIS is the cause of the theoretical 'post finasteride syndrome' then why do these men not report a cessation of androgenetic alopecia?

bostont332

I suffer from Post Finasteride Syndrome since April 2010, approximately 6 weeks after cessation of the drug. So far I have not lost any hair since being off the drug. But, I have been sexually decimated. I have extreme penile shrinkage, complete loss of libido, muscle wastage, erectile dysfunction, depression, difficulty in concentrating, and testicular aching. Suicide has been a consideration on many occasions. Believe me, PFS is far from just "theoretical".

Steve

"approximately 6 weeks after cessation of the drug. So far I have not lost any hair since being off the drug"

If you have as much hair in 6 years then there might be something to this androgen resistance theory.

With all due respect to the Dr., Occum's Razor suggests that this is a more probable cause for "finasteride discontinuation syndrome":

http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2007.00563.x/abstract

... that doesn't make it any less real. Just imagine that study in the context of propeciahelp.com.

bostont332

I have been off the drug for approximately 7 months, not 6 weeks. I have lost none of the hair I orginally had and none of the hair I regrew while on Finasteride. Prior to Finasteride I was losing hair rapidly.

Because you, and members of the mainstream medical community, do not understand the real biological mechanisms of Post Finasteride Syndrome doesnt make it any less real. There are several common findings on many who suffer from Post Finasteride Syndrome. These include but are not limited to low Vitamen D absorption, low T3, low bioavailable testosterone and low serum 3 alpha-androstanediol glucuronide levels on privously healthy men. I would be extremely interested in any study you could site that would show prior suggestion of sexual side effects could alter one's hormone profile.

But Steve, I understand your frustration. The real dangers of this medication are finally coming to light. Those who make their living from it or have medical liability must be very concerned.

oscaR

Steve, PFS is real. I struggled for a long time before even discovering propeciahelp.com.

I also suffered a deterioration in all aspects of my health only after stopping, this makes it very difficult and frustrating when attempting to get medical treatment as most will simply believe it is 'just in my head'.

Some reading for you regarding the epigenetic change theory.
http://www.propeciahelp.com/forum/viewtopic.php?f=27&t=3251

It is also true that many of these side effects are well known to those administered Fin at higher doses for prostate cancer. This should not be discounted and likely occurs due to cell death.
http://www.propeciahelp.com/forum/viewtopic.php?f=27&t=4327

bostont332

Dr. Jacobs,

If indeed epigenetic androgen insensitivity is the issue how far are we from actual humam trials?

kevin

This theory certainly does not sound like an easy fix. I pray this does not turn out to be the source of our problem. Hopefully it's something much easier to fix.

I have have been off of the drug for about a year and half. I have a non-existant libido, muscle loss, erectile dysfunction, depression, memory loss & difficulty concentrating.

Tod

same as many of you. Post-FIN conditions have pushed me close to thoughts of suicide. I spend a lot of my moments alone thinking about what the future is good for. Now that I am living in a city again, I am confronted even more starkly with the fact that nothing which used to bring me joy does anymore. And, perhaps not so strangely, I spend more time thinking about the evil of modern globalized society, technology, religion.... and how the consequence of this world's state and my own lead me toward a destiny which.... I cannot talk about here.

Justin

I have been off of propecia for 8 months now and have exoerienced extreme muscle loss, loss of libido, ED, a bend in my penis, shrunken testicles, chronic insomnia, brain fog, body and facial hair cotinues to come in lighter. So of course major depression and thoughts of suicide are daily companions.

KAH

Dr. Jacobs,

First, thank you for your interest and devotion to this horrible drug-induced syndrome.
I have been reading and trying to help someone I care about who is suffering.
Below are some interesting concepts I have read about on Propeciahelp. I would appreciate your thoughts on them and if you feel testing for their levels would be beneficial.
*alpha-melanocylte stimulating hormone.
*leptin.
*excessive cytokine production.
Lastly, should patients be tested for anemia caused as a result from antiandrogen/finasteride use (saropenia).
Do you think sublingual apomorphine or oxytocin would be a beneficial treatment option? (not a cure obviously but perhaps can help quality of life).
Thank you so very much for your time.
KAH

anon

Its interesting that you have posted this without first examining autonomic neuropathy. Muscle wasting, loss of libido, loss of morning erections, loss of sexual desire - etc - can all result due to dysfunction of the parasympathetic nervous system.

annon


I have been off the drug for 7 months. I have lost all feeling in my lower region to name just one of my symptoms. The emotional effect of not being able to feel a part of your body that has been there in my case for 32 years is hard - it may as well be cut off. I have spoke to several doctors and in the end paid to see someone privately. I am constantly told its in my head and the NHS will not do anything more for me.

I have not only thought about suicide but actually attempted it. This is real and I wish more was being done to help me and other alike. I hope this study raises awareness that sometime soon will lead to development of a treatment.

Me

Dr.Jacobs it is your turn and oportunity to become our savior. You could get worldwide enormous prestige if you start focusing in our vast problem and try to find solutions. I´ve been to several doctors: endocrinologist, neurologist, urologist. NONE of them have the most remote idea of what is going on with us.

This is one of the worst drugs ever aproved by FDA. It crashes our minds and brain, our sexual response, our normal being, ... It is even worst because most of us are young and were absolutely healthy before finasteride.

bostont332

Those of you who are suffering like me I encourage you to go see Dr. Jacobs. He is without doubt the most highly qualified doctor we have ever had to try to treat PFS. The more case files we add to this problem the closer we come to an answer.

george1

doc you are way off! the previous poster makes a very good point!! You don't understand the important implication of the mental-sexual symptoms, they are not merely the symptoms of hypogonadism, there is neurotransmiitter and most likely adrenal involvement. I would suggest noradrenaline and dopamine, to have a major role. Patients need to look at ways to increase these, I am using Licorice extract with very good results. Also physical exercise and supplements combined can be very helpful.

G

The main issue is the absence of 5-ar II enzyme agonists or drugs to increase its synthesis. Trying to treat a disorder with multiple hormonal manipulations without recovering the function of the enzyme is rather faulty. I think that the major target we should have right now is to find substances that increase expression or synthesis of the enzyme that has been affected by finasteride. In my latest tests i have so low 3-adiol-g that barely any testosterone transforms into dht, it all goes into estradiol e2, causing inflammation and atrophy in my testicles. I cannot correct this no matter what hormones i use. My adrenals are also affected since 5-ar II plays a serious role in adrenal hormonal pathways too. I tried treating with cortisol and other hormones and all i ended up is causing more problems.

Contacting research facilities and universities to help us is the best choice we have. Hormonal band-aids for the rest of our lives should be the last resort.

bostont332

Dr. Jacobs,

If the theory you present is correct what do you think about the use of demethylating agents such as Procaine as a treatment option?

G

I am not aware of how these agents function or what their specificity for our problem could be. I know however that anaesthetics like procaine, ketamine etc etc where used to treat post infectious chronic fatigue disorders but the purpose of using them was based on a different thinking than demethylation.

Dr J, let me ask you this. If a patient of yours is taking an anti-estrogen solely (like aromasin), to bring down high estradiol/estrone levels, at what time in the course of treatment would you expect his T levels to rise (if they rise at all) and his dht to show some improvement as well?

G

Wow this is rather awkward. I took my 3d dose of aromasin yesterday at 12.5mg (half a pill). The reason was to control high e2 levels (55 pg/ml) and try to boost T into dht conversion. 3-adiol-g levels where almost minimal (1.24 with normal ranges of 3.5-21). Well imagine what. Not only didn't my testicular aches and shrinkage subside but i started having more intense pains and shrinkage and PAINFUL Nipples!!! This is really bizarre, or am i in need of higher aromasin dosages??

I guess it is due to the impossibility of increased T to convert into dht and a rebound rise in e2. I can't explain this otherwise. Also thinking of incorporating dostinex/cabergoline to bring down the slighty higher progesterone levels. What is wrong with this post finasteride issue. Has it rendered our 5-ar II so damn completely inactive???

Colin

G- there's no way aromasin should do that. You've got it all wrong. Aromasin takes about a week to stablise in your blood and start going about its business. Let us know how you are after a few weeks of treatment please, preferably 4 weeks....

Colin

And theres no way you would get a rebound in estrogen like that. Not with aromasin.

Issues with 3-adiol-g are worrying though

bostont332

This seems to confirm epigentic theory -

Methylation of the androgen receptor promoter CpG island is associated with loss of androgen receptor expression in prostate cancer cells.

Normal prostate epithelial cell strains demonstrate no methylation. Exposure of AR-negative prostate cancer cell lines to 5-aza-2' deoxycytidine, a demethylating agent, induces the reexpression of AR RNA in DuPro and TSU-PR1. This reexpression is associated with a demethylation of this region. Prostate-specific antigen, an androgen-responsive gene, is also specifically induced in these lines after AR reexpression. Therefore, in vitro DNA methylation of the 5' CpG AR island may be associated with the loss of AR expression. Furthermore, our results demonstrate that treatment with demethylating agents may engender the reexpression and function of the androgen receptor in AR-negative cell lines.

http://www.ncbi.nlm.nih.gov/pubmed/9850055


G

So you think that aromasin can do its job and decrease estrogen levels enough to stop the ongoing testicular atrophy im suffering from?? I haven't seen any results after 4 days of using it, rather i would say it deteriorated my situation rapidly. More over, i started feeling exploding pains in the centre of my testicles during aromasin use. Same pains i had during arimidex use which where seriously bothersome.

Dr. Alan told me that high estrogen levels could be combated by aromasin but that doesn't mean there should be any substantial T increase on the other hand.

I am looking more into some serm that works to deplete mRNA synthesis of aromatase and also raise T levels, thinking about 6-OXO lately, but does this raise DhT levels??

Also thinking of taking high doses of pregnyl 1500 mUI or more just to see if something happens, which i doubt since my FSH is pretty normal.

Last think that bothers me is the low cholesterol levels and low levels of all the lipid soluble vitamins (chol levels are around 113) and what this could mean for my recovery. I am trying means to raise them but i dont seem to absorb lipids properly, im thinking of coconut oil or anything else that could help

Colin

Im not sure buddy.

I don't think the AI's are bad but clearly your probelms dont root from the high estrogen. What kind of SHBG levels do you have?

THe 6-0X0 isn't the way forward, it can harm you and it isnt even that great anyway. Not worth the risk.

Not sure about the other stuff. As ive said to you, creatine monohydrate can help DHT levels.

Anyway, if i were you id think of serious amounts of testosterone boosting activities over a sustained period of time. Your condition is only going to fix itself in baby steps (imo) so give you body a chance to readjust. You'd be surprised how well your body and self-correct and recover (you balls!) with a few correct steps.

I'd also consider consulting a herbal expert. The right cocktail could help. I might try this if i dont get results elsewhere.

A j G

I too suffered post drug effects. I took Propecia for 2 yrs no problems ever till the last few weeks last April 2010 could keep it up at first then couldn't get it up at all eventually i went to a urologist who gave me testosterone because my total level was very low end of normal and free t was way lower than normal. He also gave me CT of abd. pelvis b\c of testicle pain.. CT was normal. After taking the T patch for a couple of days I had some promise I could get up and stay up but size was down but id say 20%.I quit taking the Testosterone after a couple of months and still can get up and stay up size is still way down. Ive given up somewhere I read to try Humane growth hormone. That may be my finale attempt to get my self back to old form.

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