PROPECIAHELP: Persistent Finasteride Propecia Proscar side effects info & discussion forum

Forum for men with PERSISTENT sexual, mental & physical side effects which CONTINUE DESPITE QUITTING Finasteride (Propecia, Proscar), a 5AR inhibitor drug for hair loss, prostate enlargement & prostate cancer.
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PostPosted: Fri Oct 15, 2010 2:42 pm 
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Bad news, as ever...


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PostPosted: Fri Oct 15, 2010 7:32 pm 
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Joined: Mon Feb 25, 2008 8:25 pm
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Age: 24
Drug: Propecia
Usage: 1 week
Started: 04 Oct 2005
Stopped: 11 Oct 2005
Location: New York, USA
The way I see it, the advancement of a diagnosis is never bad news.

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PostPosted: Fri Oct 15, 2010 7:55 pm 
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Drug: Proscar
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Guys, keep in mind this has not been proven yet, it is simply his thoughts on the matter and wondering if/where the issues may lie.

That said, he is certainly more qualified than any of us to make such statements, and his insights are of absolute value to understanding and investigating this problem further.

The fact he is focusing on the androgen receptor and epigenetics is a crucial point, but wether these areas are the absolute root cause still needs to be tested for. That is the next step -- getting research scientists interested enough in this problem to undertake the type of testing we need to get more answers.

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PostPosted: Fri Oct 15, 2010 9:52 pm 
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How does this explain that when i quit i was feeling great for 2 weeks then suddenly i was hornier than ever in my life and sex was all i thought about for 3 weeks while feeling completely dead in all aspects but sexually. I could hardly move with out hurting yet im having an erection?

I dont belive this is the awnser to our problems. Our problem involves so much more than this explains imo.

Think its great that finally someone is taking our problems seriously tho and we will eventually find a cure for this crap. Ive had days and weeks even of complete recovery so im sure we will be okay in the end!

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common epigenetic effect interacts with a less common variant in the androgen receptor gene CAG repeat profile to cause its syndrome of crippling persistent post-finasteride hypogonadism.
I dont think this explains how are condition progressed and not all of our symptoms either
.
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PostPosted: Sat Oct 16, 2010 11:45 am 
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Joined: Wed Feb 28, 2007 1:45 am
Posts: 774
Location: Boston
Age: 36
Drug: Propecia
Usage: 21days only!
Started: 21 Jan 2007
Stopped: 14 Feb 2007
Location: Boston
Mew wrote:
Guys, keep in mind this has not been proven yet, it is simply his thoughts on the matter and wondering if/where the issues may lie.

That said, he is certainly more qualified than any of us to make such statements, and his insights are of absolute value to understanding and investigating this problem further.

The fact he is focusing on the androgen receptor and epigenetics is a crucial point, but wether these areas are the absolute root cause still needs to be tested for. That is the next step -- getting research scientists interested enough in this problem to undertake the type of testing we need to get more answers.



From his tone however, it seems as if he maybe hasnt had much luck lately in treating people. I hope this is not the case as I am going to be seeing him soon.


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PostPosted: Tue Jun 07, 2011 7:48 pm 
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Joined: Tue Jun 07, 2011 4:00 pm
Posts: 12
Age: 28
Drug: Propecia
Usage: ~3 months
Started: 0- 1-2007
Stopped: 0- 4-2007
Location: Westchester, NY
Mikey428, would you mind briefly sharing what specifically you are seeing Jacobs for? (I have no way to privately message you) He is local to me and I am interested in seeing him about my ongoing prostate/ejaculation issues that urologists seem to be shrugging off.

Also, in general, is this something that Endos/Neuro-Endos will deal with? Am I barking up the wrong tree? I need to have initial blood work done, should I see an endo before or after to point me in the right direction? I've been reading all over the forums, but I'm still kind of lost as far as first steps to take now that I realize my issues are likely related to PFS.


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PostPosted: Tue Nov 01, 2011 8:50 pm 
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Joined: Mon Jul 28, 2008 5:07 am
Posts: 96
Age: 30
Drug: Propecia
Usage: 13 Months
Location: Canada
I don't want to paint all cases with the blood to say that it is more neuro issue than androgenic.
I have problems (well am devastated really) for 4 years and even now, 2 days of Tribulus improves my libido and erection considerably. Just that after a certain point it does not work...

Mark


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PostPosted: Sun Mar 10, 2013 12:40 am 
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Joined: Sun Nov 11, 2012 3:09 am
Posts: 4
Age: 29
Drug: Proscar
Usage: 4 years
Started: 01 Jan 2005
Stopped: 01 Jan 2011
Location: toronto, ontario
Has there been any progress in treatments? I see that nothing has been posted to this thread in quite a while.

My symptoms are not as severe as some people on here but libido, sensitivity, ED etc. are truly getting me down. Its been about a year since I went off and finally determined to find treatment but really have no idea where to start.


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PostPosted: Fri Apr 28, 2017 5:24 pm 
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Joined: Thu Apr 27, 2017 11:04 pm
Posts: 3
Age: 24
Drug: Propecia
Usage: 6 months
Started: 10 Mar 2011
Stopped: 02 Sep 2011
Location: London
Hi there,

This was just general thought I have on PFS. I have also been suffering from the persistent sexual dysfunction associated with this drug for the last 8 years. Along with many people who have taken Finasteride or similar 5a-reductase inhibitors such as acne medication Isotretinoin as well as SSRI's. It appears this problem is far more common than it appears. Which is likely the result of many males being embarrassed or ashamed of reporting it.

It seems that this problem is caused be a fundamental change in the brain, which is seemingly permanent. If this is the result of an epigenetic change or malfunction of a receptor etc. it seems incredibly unlikely that any pharmaceutical treatment will become available any time soon. As this would likely require a drug or cell based treatment which alters the expression of cells etc. Not to mention the 10+ years associated with developing novel drug treatments.

Although it may sound drastic, I can't help but think that Deep Brain Stimulation (DBS) is far more likely to be a viable treatment option. Many of the neuropsychiatric disorders currently being treated with DBS involve the mesolimbic dopamine reward circuitry, including Parkinson's, schizophrenia, addiction, depression, etc. and by the sounds of most sufferers' symptoms I would suspect that Finasteride along with Isotretinoin etc. have somehow impaired the dopamine circuitry as evidenced by studies of the nucleus accumbens in PFS sufferers. Dopamine is heavily involved in motivation and reward and what are generally called "appetitive" behaviours, including sexual behaviour.

Given that DBS was recently used for Anorexia, it seems highly plausible that a strong case could be made for its use in sexual dysfunction, a condition which affects a surprising number of people and is arguable far more problematic than Anorexia. I would argue that of all the symptoms that a PFS sufferer may face, persistent sexual dysfunction, is by far the most debilitating and disturbing. If this single aspect of the condition could be treated, I'm sure most sufferers would find life far more bearable and the likelihood of suicide would be greatly reduced. Especially as treating the dopamine circuitry, is likely to simultaneously treat aspects of both depression and anhedonia which many PFS sufferers have to endure.

The PFS foundation may be the only organisation in the world at this moment with enough legitimacy and following to pursue and raise interest into this research area. Again though it seems like a drastic treatment, I can't help but feel that pursuing a pharmaceutical treatment is likely to take far longer, be far less effective and harbor far more side effects than DBS. I'm sure many would agree with me, that when dealing with a condition such as this, time truly is of the essence. Each extra year without treatment is an extra year of possible suicides and suffering.

Many Thanks,

Jam


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PostPosted: Tue Jan 30, 2018 12:08 am 
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Joined: Sun Jan 14, 2018 10:53 pm
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Age: 38
Drug: Propecia
Usage: 8 years
Location: Bulgaria
Dr. Allan Jacobs's latest post on PFS, from 5 years ago, has not been included in this thread, so I thought I would add it. I must say I am not impressed by it at all, especially his claim that somehow depression and anxiety are the main causative factor for PFS in 50% of sufferers. I am posting the text below so everyone can make their own conclusions.
___________
http://blog.alanjacobsmd.com/alan-jacob ... drome.html

>>
01/11/2013
Clinical Experience in the Evaluation and Treatment of 300 cases of Post Finasteride Syndrome

In April 6, 2010 I blogged here on A Neuroendocrine Approach to Finasteride Side Effects in Men. Now I am reporting on how we've done over the past 3 years caring for around 300 men sufferring from Post Finasteride Syndrome (PFS).

First, the group of 300 + men presenting with sexual dysfunction while on finasteride, or recently or not-so-recently off it, did all show a similarly abnormal hormonal profile called hypogonadotropic hypogonadism or HH, which means low testosterone along with low LH and FSH, the pituitary hormones that stimulate the gonads. However, the group was otherwise not monolithic. In fact, I found three groups into which these men could be separately categorized.

10% of the the guys actually had a different reason to have HH, completely unrelated to the finasteride. For example, they had a benign pituitary tumor or some other related pituitary condition partially blocking its function in the hypothalamic-pituitary-gonadal (HPG) axis, so they could not make LH and FSH, and thus their testicles stopped making testosterone.

50% of the guys came with a family history, or genetic load, for emotional conditions such as anxiety and depression. Then when the finasteride caused big-time sexual problems, they were so distressed that their mental anguish itself appearred strong enough to suppress their HPG axis such that they had a separate reason to not be able to raise their LH and FSH when their testosterone declined, presumably initially from the finasteride. This mechanism is no different than the dancers and marathon-running women who loose their menstrual cycles. Such huge stressors, whether physical or mental, cause the higher brain centers in the temporal lobes to put the brakes on fertility, as if it were not a good time to have kids if your own internal stiuation is so hectic to begin with. The emotional parts of the brain inhibit the HPG axis directly, again blocking LH and FSH from responding to the low sex hormones. In this situation it was unclear whether the finasteride, their emotional brains, or both were impeding these guys' ability to get better.

Then there were the 40% of guys who had no other reason than PFS to have HH, and to be sexually impaired, physically perturbed and mentally distraught - the pure post finasteride syndrome.

The first group of guys got treated in the appropriate neurosurgical setting, or reassured that there was no treatment needed except to normalize their testosterone levels. The second group presented more of a problem as they needed to be shaken out of their despair first in order for their HPG axis to be released from the grip of their higher emotional brian centers and be able to start making appropriate amounts of LH and FSH, leaving the only variable left to deal with the finasteride. The best way to do this was to raise their testosterone levels directly and aggressively such that they felt great and trusted their bodies to be normalizable. Also, in many cases anti-anxiety medications were added and were very helpful. Gradually these guys' minds eased and they were eventually given the option to taper off the hormone after 6-12 months to see if they would stay normal on their own, though very few have as of yet wanted to. The third group could most often be treated successfully by using medications to raise LH and FSH directly and letting their testicles follow suit and make more testosterone. Sometimes LH and FSH would not budge enough and direct testosterone replacement was necessary and did the trick as long as the dose was pushed high enough and estradiol was kept from rising, due to peripheral conversion (aromatization) of the testosterone, with a different medication.

PFS is an troublesome condition, however, my experience is that it is well worth applying the neuroendocrine approach to caring for these guys since it has been most often beneficial to them.
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