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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 Post subject: Former - my story
PostPosted: Thu Nov 11, 2010 7:58 pm 
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Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
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Edit: Remove Temporarily


Last edited by Former on Sun Dec 05, 2010 10:40 pm, edited 1 time in total.

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 Post subject: Re: Former - my story
PostPosted: Thu Nov 11, 2010 9:19 pm 
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Welcome

On the positive side your TT is fairly good and you're in the same state as Dr. Shippen and close to Dr. Jacobs.


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 Post subject: Re: Former - my story
PostPosted: Thu Nov 11, 2010 10:28 pm 
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Hello Former,
Im sorry to read that you have been hit so bad by the side effects. I think out of everything the comprehension and cognitive functions going are the worst of all - without them its impossible to even pretend everything is ok. And of course once you find this website panic sets it. To quote someone else; “my worst nightmare was staring at me in black and white on the computer screen.” I do find it shocking that so many men here are intelligent, successful, popular and talented before using finasteride, only to be reduced to shadows of their former selves.

Get yourself a good doctor (ie. Andrologist/endocrinologist) someone that cares. Read this site especially the androgen insensitivity theories. Find some medication that will help alleviate the symptoms. Help find a cure.

hair loss + spare cash + thinking hairloss is important + a genetic predispostion to negative side effects of 5ar inhibitors = bad times!


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 Post subject: Re: Former - my story
PostPosted: Thu Nov 11, 2010 11:16 pm 
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Age: 30
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Oscar wrote:
I do find it shocking that so many men here are intelligent, successful, popular and talented before using finasteride, only to be reduced to shadows of their former selves.

I think this has to be expected. If your biggest problem in life is hairloss, that means that you are a happy person, a person with a great life who has no real problem. Too bad we couldn't understand it before. With this, I just want to explain the high proportion of intelligent and successful people on this board, and not by any means say that what happened to us is our fault.

Former,
Mental side effects are the worst thing we can have, but, according to many people's experience, they are also the easiest sides to reverse, so don't lose your hope to get back a good part of your life. As others have noted, you should read other people's experiences.

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My story: viewtopic.php?t=3556
My blood tests: viewtopic.php?p=19897#19897


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 Post subject: Re: Former - my story
PostPosted: Fri Nov 12, 2010 1:18 am 
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Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
Stopped: 11 Oct 2010
Location: USA
I understand that the cognitive effects are often the first to subside. I'm trying to stay as positive as possible (it's quite difficult though). Luckily for me, I have very supportive parents who are fully understanding of my situation. I have also disclosed what I believe is going to two close friends who have known me for a long time and definitely do not think that I am being a hypochondriac.

I know I shouldn't be posting research in this part of the forum, but I'm struggling enough that trying to keep track of multiple posts isn't an extra stress I need.

When using finasteride for hairloss, we are "blocking DHT," but when finasteride (or similar drug) is used for prostate issues, the purpose is called "androgen ablation." Androgen ablation is known to have all the side effects we are seeing with the use of finasteride, not just the loss of libido. (http://cme.medscape.com/viewarticle/578215, http://healthandprostate.com/index.php/treatment/general-complications-of-androgen-ablation) - The second article even indicates osteoporosis as a side effect of androgen ablation, possibly providing a link to why a number of those on this site have found themselves to be Vitamin D deficient.

However, the cause of these side effects is not well understood. Other prescriptions can be used to limit testosterone, which is the hormone that is most often sought for limitation via androgen ablation therapy. But in the case of testosterone blockage, most men return to baseline within two years. (http://www.ncbi.nlm.nih.gov/pubmed/11900222)

Should we see a reversal of symptoms within 2 years then? No, such is not the case because we were not inhibiting testosterone, but DHT. In reality, no one currently knows what is going on with us who are suffering. Also, unfortunately, the long-term test group for Dutasteride and Finasteride, people with prostate cancer, tends to be older and thus, attributing many of the symptoms of androgen ablation to old age (or cancer) is a simple solution.

An additional letdown is the fact that old people with cancer tend not to live as many additional years as twenty-year old men, making them a less than quality group for researching long-term effects for androgen suppression. While the webpages I linked earlier in this post may not specifically identify finasteride, they are identifying effects from other hormone suppressants. No, I can't say with 100% certainty that the side effects of two similar drugs will mirror each other, but similar side effects from similar hormone suppressions would seem extremely feasible.

Effectively, what I am saying (and this is probably not a surprise to anyone) is that we have been performing androgen ablation on ourselves and the side effects have not been studied well because the disease that this process was intended to treat (cancer) is more lethal than any side effect. As has often been noted, no doctor (that I am aware of) has been able to provide a treatment with consistent results. Time is the only consistent factor for any recovery. Does this mean there is no hope? No, but we must be careful not to grasp at any "potential" solution thrown our way. We are already victims and we must be careful not to become easy prey in our time of vulnerability.


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 Post subject: Re: Former - my story
PostPosted: Fri Nov 12, 2010 2:03 am 
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Age: 31
Drug: Proscar
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Thanks for your summary, as others around here have also come to same conclusions (Fin = androgen ablation/deprivation)

Quote:
But in the case of testosterone blockage, most men return to baseline within two years.

Should we see a reversal of symptoms within 2 years then? No, such is not the case because we were not inhibiting testosterone, but DHT. In reality, no one currently knows what is going on with us who are suffering.


Have a read of the following. Despite return of androgen values, some men who underwent longterm androgen deprivation did not regain libido/potency.

viewtopic.php?f=9&t=1961&hilit=potency

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 Post subject: Re: Former - my story
PostPosted: Fri Nov 12, 2010 2:50 am 
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Mew wrote:
Thanks for your summary, as others around here have also come to same conclusions (Fin = androgen ablation/deprivation)

Quote:
But in the case of testosterone blockage, most men return to baseline within two years.

Should we see a reversal of symptoms within 2 years then? No, such is not the case because we were not inhibiting testosterone, but DHT. In reality, no one currently knows what is going on with us who are suffering.


Have a read of the following. Despite return of androgen values, some men who underwent longterm androgen deprivation did not regain libido/potency.

viewtopic.php?f=9&t=1961&hilit=potency

The study you qouted says LH goes higher before testes but we have our LH and FSH in the gutter ever after 12 - 24 months. Why our LH and FSH are not going up?


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 Post subject: Re: Former - my story
PostPosted: Fri Nov 12, 2010 7:00 am 
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Age: 31
Drug: Proscar
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Location: Propeciahelp
Quote:
The study you qouted says LH goes higher before testes but we have our LH and FSH in the gutter ever after 12 - 24 months. Why our LH and FSH are not going up?


Well that's the million dollar question, isn't it?

The hypothalamus is the command center in the brain that releases GnRH to the pituitary, which then releases LH/FSH for the testes to produce Testosterone etc.


A member of Propeciahelp.com was diagnosed with tertiary hypogonadism - hypothalamic by his doctor. Below is his diagnosis:

Quote:
"Doctor's diagnosis: "This patient presented with hypogonadism. His free T was 11.4 (N 19-94) and bio T was 1.18 (N 2-8.6). FSH 3.3 and LH 2.1 were not increased. In view of this, to differentiate between secondary hypopituitary and tertiary hypothalamic hypogonadism the patient had LRH stimulation tests done. The baseline value of FSH was 3.8, stimulated to the value of 6.4. The baseline value of LH was 3.9, stimulated to the value of 24. There was therefore a normal response of FSH and LH to LRH stimulation and this ruled out a pituitary problem. He has tertiary hypogonadism-hypothalamic. Treatment of this condition is replacement therapy with testosterone. This could be in the form of injection of Delatestryl 200 to 400 mg every four weeks or Andriol tablets starting with 80 mg b.i.d for two to three weeks, followed by a maintenance dose of 40 to 120 mg daily."


As you can read, this ex-Fin user's problem was not at the pituitary level, since his pituitary responded to the LRH stimulation test (LH & FSH increased). Thus, it would appear his problem involves a dysregulation of the hypothalamic pituitary axis, due to some issue involving downregulated GnRH production or response.

If this is a defining pathology of the post-Finasteride syndrome (tertiary hypogonadism, downregulation of GnRH production), the question is, WHY would the hypothalamus's GnRH production (resulting in persistent hypogonadism) be disrupted from Finasteride use?

Normally, feedback loops involving low Testosterone values would signal the hypothalamus to release GnRH, to tell the pituitary to release LH, to increase Testosterone production in the testes. In our cases however, Testosterone remains low, the hypothalamus does not sense this decrease (or perhaps falsely senses/is fixed in a state of "high T"?) and thus does not signal the pituitary, meaning LH/FSH remain low. On the other hand, perhaps the pituitary is not receiving, or responding properly to, GnRH post-Fin.

Or, perhaps the androgen receptors in the hypothalamus or pituitary became upregulated and "hypersensitive" (as can occur via androgen deprivation therapy) while on Finasteride, such that they perceive a low value of Testosterone as "high" and thus do not produce adequate production of GnRH or LH as a result. It is interesting to note that 5AR2 is found in the hypothalamus, according to the attached image (and thus, 5AR2/androgen metabolism in those tissues were probably inhibited on the drug).

In addition, considering Finasteride is a Testosterone analogue, perhaps our situation has a lot in common with men who abuse anabolic steroids and find their HTPA shuts down after a cycle -- except in our cases, permanent re-activation of our axis seems to be more difficult compared to bodybuilders, for some reason.

We all have our theories, but really the reason for why men are suffering from tertiary and persistent hypogonadism from Finasteride use is a question that can only be answered via investigation by research scientists, hopefully. In the meantime, this is Former's Member Story thread so we should try and keep it on track as such.


Attachments:
5ar-distribution.gif
5ar-distribution.gif [ 26.8 KiB | Viewed 2268 times ]

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 Post subject: Re: Former - my story
PostPosted: Sat Nov 13, 2010 1:12 am 
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:D Good research in one day Former! (btw- if your T levels are fine its not hypogonadism)

Former wrote:
The second article even indicates osteoporosis as a side effect of androgen ablation, possibly providing a link to why a number of those on this site have found themselves to be Vitamin D deficient.


Is low Vit D a symptom or a cause of osteoperosis? Anyway, a return of normal T levels should cure any such problem. I currently prefer the relationship between Androgen Receptors and Vitamin D Receptors to explain this symptom.

Former wrote:
An additional letdown is the fact that old people with cancer tend not to live as many additional years as twenty-year old men, making them a less than quality group for researching long-term effects for androgen suppression


I opened a thread in the theory section basically stating we are suffering from the long term effects of androgen ablation viewtopic.php?f=27&t=4327. I could not find a single paper discussing long term side effects from this treatment - if such side effects (like brain fog) where more common why are they not mentioned more frequently, even if the patients are old? Despite the fact millions of men have undergone androgen ablation!?


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 Post subject: Re: Former - my story
PostPosted: Sat Nov 13, 2010 1:25 am 
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Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
Stopped: 11 Oct 2010
Location: USA
Oscar,

If you check this article (http://cme.medscape.com/viewarticle/578215), androgen ablation therapy has been directly linked to cognitive impairment. The phenomenon is not well studied as "with the ablation therapy, there are so many more pronounced symptoms and these are clearly evidenced."

Btw - I had been reading a thread started by JN (I believe) and was curious as to whether any progress had every been made toward forming a non-profit group for fin sufferers? My mind may not function like the glistening Bugatti that it once was; it's now more of a rusted out Ford Mustang, but the horsepower is still there. I'm more than willing to contribute; while I can't really feel motivated, old habits (even positive ones) die hard.


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 Post subject: Re: Former - my story
PostPosted: Sat Nov 13, 2010 2:08 am 
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Former,

Good find. But it is not clear if the article is reffering to side-effects on ADT or side-effects continuing after ADT. Something I have got stuck on whilst reading similar articles. At no point does it mention side effects persisting apart from the following quote;

Quote:
For some men, these changes may only be temporary, but for others, they may be permanent. The results of a recent study that was not included in this analysis showed that when patients are receiving short-term therapy, the cognitive effects were alleviated when treatment was discontinued, Dr. Nelson explained.

"But many patients are on long-term therapy, probably for the rest of their lives," he said. "And if they are able to discontinue treatment, they may have experienced structural changes in the testes and not produce as much testosterone, so side effects will continue."


We need to get first hand knowledge from an oncologist with experience administering androgen ablation to see what they feel are the persistent effects of such treatment. If brain damage has occured the answer might be stem cell therapy.


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 Post subject: Re: Former - my story
PostPosted: Sat Nov 13, 2010 2:50 pm 
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Posts: 81
Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
Stopped: 11 Oct 2010
Location: USA
As far as androgen ablation goes, this guy might be a place to start:

http://www.upmc.com/Services/Urology/Experts/ResearchFaculty/Pages/Zhou-Wang.aspx

http://www.upmc.com/Services/Urology/Experts/ResearchFaculty/Documents/Wang_CV.pdf


He's specifically studied the use of finasteride for androgen ablation. Likely, he has no cure, but may have some insight.


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 Post subject: Re: Former - my story
PostPosted: Wed May 25, 2011 7:48 pm 
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Joined: Thu Oct 21, 2010 2:36 pm
Posts: 81
Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
Stopped: 11 Oct 2010
Location: USA
Now that I've been off P for about 7 months, I suppose the time has come for an update. While not having my original member story posted will leave less information for comparison, I'm not ready to have my OP up again because of how dire/depressing it is.

Mental
This is the area in which I suffered/am suffering most. I am not able to have cogent conversation without losing my place within a conversion every minute or so. My memory has improved substantially, but my able to speak freely is still rather limited. My anxiety has also improved, but I am still easily overwhelmed by minor stresses. Unfortunately, I've had to leave my job; I was mired in a state of panic and depression from which I couldn't find any relief. Hopefully, in a year or so, I will see some more improvement in this sector and be able to resume working at my typically high level of competence.

Oct. 10 - 0/10
May 11 - 4/10

Sexual
I do have a libido and it has increased with my lessened anxiety and depression. I've been having morning erections for over 2 months now, although, they are not stellar. I can also get a 75% erection, but maintaining it can be difficult. Hopefully, as my mental state improves, I'll be able to work the ladies again, and really get a test of where I'm at sexually.

Oct. 10 - 3/10
May 11 - 5/10

Other
I'm not sure if my loss of collagen is directly due to P usage, or the severity of stress I've endured over the past 7 months. At 23, I'm beginning to develop prominent forehead wrinkles and significant under eye wrinkles. However, neither set of wrinkles has appeared to have worsened during the past 3 months. The wrinkles may have even improved slightly, but I am not 100% sure.

I've also seen a significant decrease in heart palpitations, but this may be a result of reduced stress. However, I have noticed that when I try to go for a jog (even a light one), but skin breaks out in a painful heat rash. I used to be a highly competitive distance runner and endurance athlete, so I'm hoping this rash ordeal goes away as my body begins to relax further.

Additionally, I no long have dry eyes to the point of pain. No, my eyes are not 100%, and I still have vitreous floaters and light sensitivity, but I have experienced some improvement.


If I had to venture a guess as to what causes my continued impairment, I would have to say a neurological/brain based problem. My hormone profile has improved to where my T, Free T, and DHT are at a high normal level for a 20-something male. My estradiol has also dropped to the low 20s. All other blood markers are well within range. I don't believe that I have androgen insensitivity (but that I am not saying that no one does, as P affects numerous processes within the body and to assume each person is affected in the same way would be assassinine) because I am adding strength at the gym, growing facial hair, and losing hair on my head. I think that I am currently in a state similar to people who have PTSD, although, not due to a externally traumatic experience. With time, I suspect the majority of my issues will resolve, and I am actively seeking psychiatric counseling without the use of medication. As for the dry eyes and some of the sexual issues, the previous lack of adrogens may have caused damage to these tissues/glands, leaving me with impaired function. I expect to see continued improvements here, although I may never reach 100%.

As an estimate, if I continue to improve at my current rate, I would say that I might be 95% in 18-24 months. Hopefully I begin to see some major improvement in the near future, as I'm not sure I can endure giving up my career/life ambitions for this nonsense. While I do yet appear to be pretty f***ed, I remain optimistic. I don't really have a choice to not be optimistic, because to the best of my knowledge, you only get one shot to enjoy yourself.

If anyone has any advice/comments or questions about my original member story, feel free to shoot me a PM.

Take care,

Former


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 Post subject: Re: Former - my story
PostPosted: Fri Jun 17, 2011 9:09 pm 
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Posts: 81
Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
Stopped: 11 Oct 2010
Location: USA
Going to try creatine and this is why:

Creatine 'boosts brain power'
http://news.bbc.co.uk/2/hi/health/3145223.stm

Creatine treatment promotes differentiation of GABA-ergic neuronal precursors in cultured fetal rat spinal cord.
http://www.ncbi.nlm.nih.gov/pubmed/17526013

Effects of creatine treatment on the survival of dopaminergic neurons in cultured fetal ventral mesencephalic tissue.
http://www.ncbi.nlm.nih.gov/pubmed/15890457

A Potential Role for Creatine in Drug Abuse?
http://www.ncbi.nlm.nih.gov/pubmed/21399936

Creatine monohydrate in resistant depression: a preliminary study.
http://www.ncbi.nlm.nih.gov/pubmed/17988366

Three weeks of creatine monohydrate supplementation affects dihydrotestosterone to testosterone ratio in college-aged rugby players.
http://www.ncbi.nlm.nih.gov/pubmed/19741313


Overall Summary:

Creatine appears to provide extra energy for the brain while also providing neurotransmitter modulating and neuroprotective properties. Additionally, creatine has been shown to increase the T:DHT ratio. Could this be due to increased 5AR activity (although no idea whether 5ARI or 5ARII)?

During training periods in the past, I have used creatine and received positive physical and maybe mental benefits (and I was on P at the time). Unfortunately, there is not much evidence to indicating whether benefits from creatine supplementation will last after supplementation has stopped.


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 Post subject: Re: Former - my story
PostPosted: Fri Jun 17, 2011 9:25 pm 
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Location: Chicago
Its not a cure.


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 Post subject: Re: Former - my story
PostPosted: Fri Jun 17, 2011 9:38 pm 
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Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
Stopped: 11 Oct 2010
Location: USA
Glad this is a forum full of supportive members and not people who denigrate the attempts of others to get healthy solely on the basis of individual experience with a currently incomprehensibly difficult problem.


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 Post subject: Re: Former - my story
PostPosted: Fri Jun 17, 2011 11:29 pm 
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Former wrote:
Glad this is a forum full of supportive members and not people who denigrate the attempts of others to get healthy solely on the basis of individual experience with a currently incomprehensibly difficult problem.



I am just telling you how it is man... people have taken it before on here...Plus, its bad on your kidneys... Make sure you drink a lot of water...


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 Post subject: Re: Former - my story
PostPosted: Sat Jun 18, 2011 12:22 am 
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Age: 40
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Stopped: 0- 9-2010
Location: Toronto
Former wrote:
Going to try creatine and this is why

Best of luck but please be careful my friend.
In some of those studies, the subjects were "loaded" with 25 g of creatine. The last study also notes:
Quote:
Although creatine is a widely used ergogenic aid, the mechanisms of action are incompletely understood, particularly in relation to dihydrotestosterone, and therefore the long-term clinical safety cannot be guaranteed.

That said, a short trial can't hurt.


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 Post subject: Re: Former - my story
PostPosted: Mon Sep 05, 2011 12:44 am 
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Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
Stopped: 11 Oct 2010
Location: USA
Alright - I haven't posted in a few months, as I felt taking a break from the Propecia talk would be beneficial. While I'm having a lot of life problems (social, career, etc.) due to my side effects, I can say that I have improved over the prior months. My mental speed and memory have returned. However, I can't really utilize either because of persistent and significant problems with concentration and anxiety. For those of you who have had issues with symptoms similar to PTSD (less traumatic flashbacks), could you please give me some insight into what level of recovery you've had with these problems and if your recoveries were linear or if progress was slow and then increased?

The physical issues of vitreous floaters and lessened erections, I can deal with. The inability to focus due to my body and mind feeling as if I'm constantly experiencing a car accident, not so much.

If anyone is interested in specific treatments I am trying/have tried, feel free to PM me. I prefer not to discuss them openly in the forum all the time because I don't think that a single treatment can be universally applied. Even when two people have the same symptoms, because finasteride affects so many pathways, similar symptoms in multiple sufferers can be due to different mechanisms (thus different solutions).


Best -

Former


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 Post subject: Re: Former - my story
PostPosted: Fri May 18, 2012 3:33 am 
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Joined: Thu Oct 21, 2010 2:36 pm
Posts: 81
Age: 23
Drug: Propecia
Usage: 3 yrs
Started: 10 May 2007
Stopped: 11 Oct 2010
Location: USA
After taking some time away from this site, I'm glad to say that I've been seeing some improvement and have been able to return to work on a part-time basis. However, it took 3 months of Prozac and some time on prazosin to be able to function somewhat normally again. I'd say I'm about 50% recovered. Just gonna try to keep pushing forward.


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