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: Wed Sep 17, 2014 10:18 pm 
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Joined: Tue Sep 16, 2014 10:14 pm
Posts: 23
Age: 35
Drug: Proscar
Usage: 3 months
Started: 01 Apr 2009
Stopped: 29 Jun 2009
Location: ireland
Scotsman - I am conscience that I may be hijacking legendary's tread. It is my intention to start my own tread detailingeverything to help others. However, to answer your question, it started about 6 months post crash, started out with a ttightening feeling at the base of my throat, like somebody had a slight grip on my throat, then the fatigue kicked in, which was crippling. My GP had missed diagnosed me as been depressed and put me on antidepressants, which did nothing. Usual story with everybody else here, went to endo after endo, none believed me when I told then that this was because of proscar. Eventually confided in a friend who is a doctor and knew me his whole life, refered me to an endo who had long since retired but was top of his field. He initially diagnosed me ME, or yuppie flu, but when I failed to respond to treatment, tested more and more and eventually diagnosed ADR - adverse drug reaction to proscar. He ran T and B cells blood test, needless to say it showed that my body had turned in on itself and was
attacking all my healthy cells. Told him about the choking feeling at the base of my throat, he ran thyroid antibody test, came back at 760 out of range of 0 - 60. Which comferm autoimmune. It has been documented that hormone imbalance is responsible for autoimmune conditions / Lupus. Regarding genital tightening, this only happens when I need to go to the toilet and is as a result of a cremaster muscle been inflammed due to cronic prostititis caused by hormone imbalance which was caused by proscar. Promise I will post everything on new tread over coming week, 4 years of bloods, dht, 3adiolG, gnrh, adrenials, sex hormones, immunology, LFT's backround story, the works. Hope it helps others. Cheers


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PostPosted: Thu Sep 18, 2014 10:51 pm 
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Dmal, did u test histamine? What were the values?

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PostPosted: Sun Sep 21, 2014 7:16 pm 
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Age: 35
Drug: Proscar
Usage: 3 months
Started: 01 Apr 2009
Stopped: 29 Jun 2009
Location: ireland
xptriado wrote:
Dmal, did u test histamine? What were the values?

No, but had always suffered from hayfever, until proscar, then it just stopped. No hayfever for the past five years, up till I started clinical trial with letrozole. Now hayfever is back. My endo reckons that with me its a metabolic issue triggered by proscar. Energy or mitochondrial function. Explains the autoimmune condition, fatigue, sexual function and memory issues.


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PostPosted: Mon Sep 22, 2014 5:59 pm 
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Joined: Fri Jan 04, 2013 5:47 am
Posts: 53
Age: 34
Drug: Proscar
Usage: 12 years
Started: 01 Mar 2000
Stopped: 15 Dec 2011
Location: South Africa
Hey guys, I have a fascinating update for you. Please read through this carefully and offer your insights and thoughts below.

Short recap: stopped Letrazole for a few months. Felt fantastic for most of that period, then in the final few weeks could feel the key markers of my condition start to return, namely acute lethargy and unprovoked general anxiety, followed by serious flaccid shrinkage. All for no apparent reason. Usual caveats apply: work stress seems to emphasise this, so does lack of sleep, and for me, sadly, even the smallest amounts of caffeine. I did before and after tests as below:

Previous test:

Total T: 33
E2: 76
Free T: 951 (H)




New test (3-4 months without Let):

Total T: 8.4
E2: 71
Free T: 177 (L)

What struck me here, was that usually my E seemed to inversely correlate with the T i.e. crushing my E lead to raised T and vice versa, which formed the basis of my and my doctor's hypothesis that finasteride has triggered overactivity of my aromatase enzyme. But these results showed very similar estradial levels with very different T levels. I asked me doc about this and he agreed it is very unusual. So I went to go see him, here's a transcript of that meeting (any errors are mine, he talks quickly):


Doc: Based on the mail you've sent, the results are quite interesting, in your case, as you correctly mentioned, the estradial is pretty much the same, yet the T differs substantially. I think in your case, it's not necessarily just about what's happening with the estradial itself, it may about what the body is actually doing to it. So one if the reasons why you might be noticing a better increase (in T) while on an aromatase inhibitor, is because an AI has a dual mechanism of action.

Let me show you (turns to steroid hormone chat) what in your case could be a long-term maintenance therapy. So remember that we discussed, in your case aromatase activity in your body is high and that you super-convert testosterone into estrogen. Aromatase effectively blocks testosterone from estradiol but aromatase also blocks androstenedione which is a precursor to testosterone, into estrone .

Interestingly enough, estrone has been shown to have a very big affinity for binding to the hypothalamic and pituitary tissue in men, as opposed to in women. So the affinity at the bone level, for estrone, remember low estrogen is no good as well, the affinity at the bone level is higher for estradial, the affinity at the brain level is higher for estrone. So what I suspect in your case is that perhaps, when you come off this (AI) you're super-converting it this way (shows androstenedione <> estrone pathway. So 17 beta hydroxysteroid dehydrogenase is an enzyme, but this is not the full picture because there are three different metabolites 2, 4, 16 hydroxyestrone and what the body does to these determines what happens to estrone.

So what I would recommend in your case rather, restart Letrazole, I'll give you a new scritp now, get the estrogen flat first, then once the testosterone increases, reduce the dosage until the estradiol is sitting and 50, 60 odd. When you're sitting at that level, then add something that modulates this (points to androstenedione ndione <> estrone pathway. Then we repeat tests a couple of months later if it's still holding then we ween you off the AI and continue this (the modulator) as maintenance therapy.

Me: Okay, what is the thing that modulates that?

Doc: Indole 3 Carbinol and Diindolylmethane, I3C and something called DIM. This is not a prescription medication, it's a supplement. Now, it's to be used in women.

Me: That seems to be the trend here.

Doc: (laughs) I think in your case it may be a very useful thing. It's made by Solal technologies or Metagenix makes one. The Solal one contains both I3C and DIMM built into it, I'd recommend that one rather. It's called I3Complex. Your estradiol will be lower than females, so just start with one per day. The idea is, I can't measure this. You can't measure it (estrone) like you can estrdial, so they idea is to see what happens with the test when you ween off the AI and you have this (I3C/DIM) as monotherapy, so that we do more frequently. So then what happens is that we effectively update / check the dosage to see what happens with the testosterone. Makes sense?

Me: Makes sense, new insights. That's why I was continuing to do tests, keep a diary and monitor what's happening. Suspected there was more going on behind the scenes.

Doc: I must say, from that perspective its unusual. I've only got two other men that have this type of issue. Fortunately, both have responded well to this type of intervention.

Me: The other guys do they have similar history to me in terms of...

Doc: (Starts nodding)

Me: ...Finasteride?

Doc: Yup, absolutely. Well, let's have a look and see from that perspective. We'll start with the new prescription for the letrozole, see how that goes. The other thing is, Vitamin D, what are you doing there?

Me: I was going to ask you if should get back on that (prescription strength VD), I haven't checked my levels in a while, the tests are getting expensive.

Doc: So remember post winter (winter just ended here) It's not going to be normal, coupled with the fact that your testosterone is low, bone mass is going to be at risk, so it's not a good idea (to stay low). What I would suggest is that I prescribe it for you. Do the pill twice a week (50 000UI twice weekly), do the Letrozole once daily, then in a month's time repeat the estradial test. If its flat then start fiddling around (with the dose + IC3 / DIMM modulation.) there's no point in adding the IC3 now, you want to flatten the estrogen.

Me: Great thanks, have you heard anything else from the matrix, any new insights into this condition?

Doc: There's something called G protein-coupled receptor-type 54, it's seems to be that in those patients that have a predisposition to develop low testosterone, theres seems to be an inactivating mutation where the pituitary and the hypothalamus is very sensitive to tissue estrogen. Now thats the other thing, a lot of these pesticides, plastic bottles etc, work like xenostrogens, we can't actually pick them up on blood tests, disphenalaline (sic??), works like a xenostrogens that we know, that s why women get breast cancer, so we know. And your meats need to be free range, because the other thing is that they inject animals with RDST (?) which is also synthetic estrogen. Drinking water, what do you do there?

Me: I have a filtering system.

Doc: Reverse osmosis or gravity based?

Me: Gravity.

Doc: (shakes head) No good. Gravity based are very good for taking things up to 50 microns out, average hormone is about 2 or 3 microns. The one we use here is a 7 stage RO filter. In your case I'd say be more fussy about the water you drink.

Me: Interesting, I'd done the research but wasn't sure if it was just a lot of fear-mongering or not.

Doc: We did some analysis done with Johannesburg water, which is another thing to remember, the blue drop status we enjoy is purely based on infectivity, so if you see less the 4 ecoli per (x field?) on your tap water you get blue drop status, because you don't develop cholera, it has nothing to do with the purity of the water. Point 2 is that we are a mining town which means that heavy metals are a huge problem. I treat some of the people that work for the mines, and I can tell you that as of the end of this year we will officially have contaminated mine wastage in our drinking supply. We're very fussy about water.

Me: I'm on a forum where guys are asking about flying out here to see you because so few people are taking this seriously overseas.

Doc: Really? That's strange. I thought we (South Africa) would be at the bottom of the list.

Me: What should they do to prepare?

Doc: Do the full set of tests, get a full history together so we can see the timelines etc. (NB!) We had two other guys came to see me thinking it was finasteride and we found prolactin-inducing tumours in the brain. So they did the tests but nobody bothered checking the prolactin. (My note: remember I mentioned at the beginning of all this that the first thing I did after diagnosing Secondary Hypo was the prolactin test, check your prolactin levels guys.)

Me: It's interesting, my best friend also has low T, but is wary of conventional medicine. So he took his results to his homeopath and she never even mentioned the prolactin test, I made him do it as due diligence.

Doc: This is the issue, if it's purely related to that (finasteride) and you find normal prolactin, thats fine. But if your prolactin is sitting at 200, you really can't be entertaining the finasteride as the cause of low testosterone. Then we don't even think about blocking the estrogen or doing anything, we have to get the prolactin down, scan the brain, because there's something growing there. So we've have that sort of experience (making assumptions / treating results alone) and thats what I want to guard against, one has to do this responsibly.

Recaps the treatment, plan of action moving forward:

Let 2.5 daily + VD replacement (50 000UI x2 per week)

In 4-6 weeks time do bloods, see that the E is completely flat and T has recovered.

If so, then we start reducing the Let doses, keep E mid 40-60. If it settles there, then see what the T is sitting at. That's your baseline. Then we add this to it (the I3C / DIM complex). Then every 4 weeks we test the estradiol and testosterone, if its holding then you progressively starting lowering the let dosage and we'll see then what happens.

There are natural alternatives to prescription options as well, Chrysin is a natural AI (My note, have tried this sporadically before). If we can the estradiol stable, then you may not need the letrozole, you can use a combination of chrysin and I3Complex.

Me: I stopped the let and felt great for almost two months afterwards, but the last couple weeks could feel there was a problem, so it seemed to have some kind of protracted effected.

Doc: Remember it will have a tissue benefit because it takes some time to get it in and it takes some time to wash out (My note: this is very, very true, guys that don't experience immediate benefits with let need to wait a month or more in my experience. Medium term usage, i.e. several months, has what has gotten me to the best point). Remember the effect in terms of blocking the estrogen, happens at the tissue level, what you measure is the circulating blood level, but the problem with low T is not circulating, its tissue estrogen and so forth. For obvious reasons I can't get into your tissues to see whats happening there.

So lets start there. In your case, your 17 beta ACD - you probably have that mutation in terms of converting estradiol into estrone (Ed's note: you may remember Doc's previous hypothesis that finasteride can trigger gene mutations that are lying dormant, different people have different potential mutations that may or may not be activated by food, lifestyle, medicine etc)

End Transcript


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PostPosted: Mon Sep 22, 2014 6:27 pm 
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Age: 34
Drug: Proscar
Usage: 12 years
Started: 01 Mar 2000
Stopped: 15 Dec 2011
Location: South Africa
CORRECTIONS

When he speaks about modulating the pathway with I3C/DIM, I think he means the E1 <>E2 pathway.

Also, the enzyme he's talking about at the end is 17 beta HSD, not ACD


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PostPosted: Thu Nov 20, 2014 2:27 am 
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Joined: Fri Jun 01, 2012 9:49 pm
Posts: 1097
Age: 28
Drug: Proscar
Usage: 2 Years
Started: 01 Mar 2010
Stopped: 25 May 2012
Location: Ireland
dmal wrote:
New to this, my endo here in ireland currently has me on clinical trial with letrozole only, and yeilding good results. I am in my 4 month of the trial. Started on 1.25mg ed and then increased to 2.5mg ed. Then i was dropped back to 1.5mg ed , as test levels where 4 x times over ref range. Been on 1.25mg for the past 2 months. Before letro, I was on T3 (thyroid) replacement only at 80mcg a day for 2 years - put on it by previous endo, to combat autoimmune condition that had been triggered by proscar. Btw, convinced alot of users with pfs have this issue - get T and B cells (totals and subsets) tested.Then adjusted to t4 by new endo who has me on the letro. Have had extensive testing done here in ireland. One of the many issues that the letro has helped with is energy / strength and mental clarity / mood. Still residual issues like genital tightening when I need to go to the toilet, and ball hang, however am optimistic that this will right itself once the autoimmune condition abates due to the letro. Any hoo - will post full details of my journey not only for the community but for anybody living in ireland suffering.



Hi dmal,

Can you please update us on how you are doing on letrozole ?

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PostPosted: Thu Nov 20, 2014 11:39 pm 
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Joined: Fri Jun 26, 2009 12:02 am
Posts: 2770
dmal wrote:
Scotsman - I am conscience that I may be hijacking legendary's tread. It is my intention to start my own tread detailingeverything to help others. However, to answer your question, it started about 6 months post crash, started out with a ttightening feeling at the base of my throat, like somebody had a slight grip on my throat, then the fatigue kicked in, which was crippling. My GP had missed diagnosed me as been depressed and put me on antidepressants, which did nothing. Usual story with everybody else here, went to endo after endo, none believed me when I told then that this was because of proscar. Eventually confided in a friend who is a doctor and knew me his whole life, refered me to an endo who had long since retired but was top of his field. He initially diagnosed me ME, or yuppie flu, but when I failed to respond to treatment, tested more and more and eventually diagnosed ADR - adverse drug reaction to proscar. He ran T and B cells blood test, needless to say it showed that my body had turned in on itself and was
attacking all my healthy cells. Told him about the choking feeling at the base of my throat, he ran thyroid antibody test, came back at 760 out of range of 0 - 60. Which comferm autoimmune. It has been documented that hormone imbalance is responsible for autoimmune conditions / Lupus. Regarding genital tightening, this only happens when I need to go to the toilet and is as a result of a cremaster muscle been inflammed due to cronic prostititis caused by hormone imbalance which was caused by proscar. Promise I will post everything on new tread over coming week, 4 years of bloods, dht, 3adiolG, gnrh, adrenials, sex hormones, immunology, LFT's backround story, the works. Hope it helps others. Cheers

what your dr has to say high T and B cells?
how he/you are going to treat it? what are futur complications?
interestingly I google and found
http://www.nlm.nih.gov/medlineplus/ency ... 003329.htm
How to Prepare for the Test

Tell your health care provider if you have had any of the following, which might affect your T and B cell count:

Chemotherapy
HIV
Radiation therapy
Recent or current infection
Steroid therapy
Stress
Surgery

Steroid therapy here is interesting. Fin is a steroid as we know.Not sure if there is a connection here.


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PostPosted: Sun Nov 30, 2014 7:09 pm 
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Joined: Tue Sep 16, 2014 10:14 pm
Posts: 23
Age: 35
Drug: Proscar
Usage: 3 months
Started: 01 Apr 2009
Stopped: 29 Jun 2009
Location: ireland
what your dr has to say high T and B cells?
how he/you are going to treat it? what are futur complications?
interestingly I google and found
http://www.nlm.nih.gov/medlineplus/ency ... 003329.htm
How to Prepare for the Test

Tell your health care provider if you have had any of the following, which might affect your T and B cell count:

Chemotherapy
HIV
Radiation therapy
Recent or current infection
Steroid therapy
Stress
Surgery

Steroid therapy here is interesting. Fin is a steroid as we know.Not sure if there is a connection here.[/quote]

Basically, my B-Cells and T cells were way over the reference range and my NK cells and Cytotoxic Cells (Cancer Fighting cells) were way under range. Lympocytes were fine, hence why the above didn't show up a basic blood test. You need to specify T and B Cells blood test, normal blood tests only check Lymphocytes.

Hormone Levels have a huge effect on the immune system, and any variance in hormone levels can trigger an autoimune condition or TH1 response. This has been well documented. In essense my bodys immune response was knocked from TH2 response to a TH1 response (attack everything / chronic inflammtion). This of course confirmed by my lack of seasonal hayfever for the past 4 years post proscar, until my clinical trial this summer.

will be posting full information on my current clinical trial this week, along with pathology etc.

Cao for now


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PostPosted: Tue Dec 02, 2014 5:46 am 
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Age: 26
Drug: Propecia
Usage: 2 Weeks
Started: 11 Jan 2014
Stopped: 30 Jan 2014
Location: United States
dmal wrote:

will be posting full information on my current clinical trial this week, along with pathology etc.


Bro, you said the exact same thing 2 months ago. A lot of people here, including myself, are very anxious to hear your story. We're too desperate out here to be left hanging lol.


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PostPosted: Mon Dec 08, 2014 10:22 pm 
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Joined: Tue Sep 16, 2014 10:14 pm
Posts: 23
Age: 35
Drug: Proscar
Usage: 3 months
Started: 01 Apr 2009
Stopped: 29 Jun 2009
Location: ireland
Entropy1 wrote:
dmal wrote:

will be posting full information on my current clinical trial this week, along with pathology etc.


Bro, you said the exact same thing 2 months ago. A lot of people here, including myself, are very anxious to hear your story. We're too desperate out here to be left hanging lol.



Just Posted my first of 3 posts

"Letrozole clinical trial - Part 1 of 3 - The beginning"

It's just the first part, backround history to give people an insight to how messed up things were. Will notify this tread when I post part 2 and 3.


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PostPosted: Fri Dec 12, 2014 10:05 pm 
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Posts: 33
Age: 26
Drug: Propecia
Usage: 1.5 months
Started: 22 Aug 2014
Stopped: 07 Oct 2014
Location: Utah
Any updates Legendary?


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PostPosted: Mon Dec 15, 2014 6:03 am 
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Posts: 53
Age: 34
Drug: Proscar
Usage: 12 years
Started: 01 Mar 2000
Stopped: 15 Dec 2011
Location: South Africa
Hey guys,

Only update at the moment is that I'm doing alright generally. During hectic / stressful work periods, like the one I've just been through, the key issues do return i.e. fatigue, anxiety and shrinkage. But they diminish as soon as I start taking it easy again, which is now.

I did some tests and my E / T levels were holding pretty well with 1.25 Let every other day, and x1 of that I3C/DIM complex every day.

T = 31 pmol
E2 = 75 pmol

E was slightly higher than I would have liked, so I've adjusted dosage to: 1.25 let with x1 IC3 every other day, x2 IC3 only every other day...going to do this for a few months and then report back...

Hope you're all well, if you have any other insights from that transcript I uploaded then let me know...


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PostPosted: Mon Dec 22, 2014 6:28 pm 
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Posts: 33
Age: 26
Drug: Propecia
Usage: 1.5 months
Started: 22 Aug 2014
Stopped: 07 Oct 2014
Location: Utah
Hey Legendary,

Just thought I would point out that DIM has been shown to lower DHT and possibly be a 5ar inhibitor. I'm not sure if you subscribe to that theory, but thought you would like to know. Keep us posted. I want to trial Clomid, but I'm concerned as I've read a few stories where people were worse afterward.


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 Post subject: Thank you Legendary
PostPosted: Tue Dec 30, 2014 1:46 pm 
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Posts: 194
Age: 31
Drug: Propecia
Usage: 2 years
Started: 16 Aug 2010
Stopped: 19 Aug 2012
Location: Palma de Mallorca
Thank you Legendary I think this thread have been a very positive thing for the PFS community.

Greetings.
BeLikewater


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 Post subject: Re: Thank you Legendary
PostPosted: Tue Dec 30, 2014 3:19 pm 
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Joined: Mon Apr 28, 2014 5:46 pm
Posts: 907
Location: HELL
Age: 38
Drug: Proscar
Usage: 24 days
Started: 31 Mar 2014
Stopped: 24 Apr 2014
Location: HELL
Did clomed and let work for you?

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PostPosted: Sat Mar 07, 2015 10:01 am 
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Drug: Propecia
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Started: 0- 5-2007
Stopped: 0- 8-2011
Location: Albany, New York
I see that Dr. Shalender Bhasin was mentioned in this thread (he's a doctors on the PFS study in Boston). Would anyone recommend seeing him for Clomid or should I go elsewhere? Are there any side effects anyone has experienced from Clomid?

Is Clomid effective over time, or is it a constant process of cycling on and off it? Thanks.


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PostPosted: Sun Mar 08, 2015 1:40 am 
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Drug: Dutasteride
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Started: 01 May 2007
Stopped: 01 Jun 2007
Location: USA
No one knows the answere to this question because clomids use in men to increase or "restore"testosterone levels has not been tested in large studies. The drug was made to help woman get pregnant. That's why when a doctor is giving it to a guy it's being used as an off label purpose.

When I first crashed over 4 years ago and noticed that I had low normal T I went to about 10 diff endos until finally I found one agreed my T was low and who was willing to prescribe me clomid. The way he put it, most endos would say that as soon as u come off the clomid your T levels will fall back to being just as low as they where before u went on the clomid. But to make a long story short I did a 2 year clomid restart and I worked. It restored my testosterone both free and total to the normal range. Not low normal, normal normal.


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PostPosted: Sun Mar 08, 2015 1:42 am 
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Age: 31
Drug: Dutasteride
Usage: One month
Started: 01 May 2007
Stopped: 01 Jun 2007
Location: USA
Restored for the long run. Just in case I did not make thAt clear


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PostPosted: Wed Mar 18, 2015 6:52 am 
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Joined: Wed May 08, 2013 5:43 am
Posts: 31
Age: 27
Drug: Propecia
Usage: 5 years
Started: 0- 5-2007
Stopped: 0- 8-2011
Location: Albany, New York
5 alpha victim......Thank you for the response on this, I appreciate it. Are you still monitoring your levels through blood tests? Do you need to take Clomid again, or periodically? When you took Clomid, did you take an Estrogen blocker at the same time? If so, which one?

How are your sides overall now?

Thank you in advance.


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PostPosted: Wed Mar 18, 2015 6:57 am 
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Posts: 31
Age: 27
Drug: Propecia
Usage: 5 years
Started: 0- 5-2007
Stopped: 0- 8-2011
Location: Albany, New York
5 alpha victim wrote:
No one knows the answere to this question because clomids use in men to increase or "restore"testosterone levels has not been tested in large studies. The drug was made to help woman get pregnant. That's why when a doctor is giving it to a guy it's being used as an off label purpose.

When I first crashed over 4 years ago and noticed that I had low normal T I went to about 10 diff endos until finally I found one agreed my T was low and who was willing to prescribe me clomid. The way he put it, most endos would say that as soon as u come off the clomid your T levels will fall back to being just as low as they where before u went on the clomid. But to make a long story short I did a 2 year clomid restart and I worked. It restored my testosterone both free and total to the normal range. Not low normal, normal normal.


In your 2 year clomid restart, how long were you on it then off it? Just wondering the protocol. Thanks.


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