Long Term Side Effects From Propecia - Post Finasteride Syndrome - Does it Exist?

[chrisis]

I have seen some encouraging cases of patients having great transplants without the meds, but I guess to go that route you need to really try and figure out how bald you'll be and what donor you have to play with. There's no point going down that road if you're going to be an NW7 and can scrape 6,000 grafts out of a measly donor area (at least not unless you have very conservative goals indeed; most younger men would probably be more ambitious), but if you're NW5 and have 9 - 10,000 grafts through FUT and/or FUE suddenly that looks like a plan that might work even in the absence of medication.

 

This is my case, essentially. I had surgery without Propecia (having had sides), but I was 29 and my hair loss was relatively slow. My plan is to have more surgery if and when needed, but right now (at 32) I'm doing great. It's possible I didn't even need Propecia in the first place, but up until now the industry is practically shoving it down people's throats. This needs to change.

[Matt27]

Like Chrisis, I also developed persistent side effects from using finasteride. They hit me immediately, just a couple days after I began using it.

 

The symptoms of PFS are not merely sexual. In my case, I have widespread muscle tightness and fasciculations and sleep disturbance in addition to sexual dysfunction. I had a thorough hormonal workup done prior to using the drug and there are no appreciable differences now, so I do not believe this is a hormonal disorder. That is also one of the reasons why it is difficult to prove it exists.

 

My symptoms are also less severe than many and I seem to be improving, now 8 months off of the drug. The guys who have had their lives completely destroyed by finasteride won't be on here because they are not worried about their hair.

 

Using finasteride for just a few days is the biggest mistake I have ever made. And it probably always will be.

[BlackAmish111]

Loads of guys had hormone tests done, and they often don't help. Many men with (apparently) normal hormone levels still have adverse side effects. Unless someone does a full blood panel before taking finasteride, it is impossible to know what impact it has had on an individual.

 

What is Vimm Plus? I searched but can find nothing of that name or similar.

 

Sorry Dim Plus! Not enough blood supply to brain obviously

[mahhong]

This is my case, essentially. I had surgery without Propecia (having had sides), but I was 29 and my hair loss was relatively slow. My plan is to have more surgery if and when needed, but right now (at 32) I'm doing great. It's possible I didn't even need Propecia in the first place, but up until now the industry is practically shoving it down people's throats. This needs to change.

 

Sounds good - long may it continue for you!

 

I agree that there does seem to be too much emphasis on finasteride (especially given the rare but serious complications it can inflict and the way it works). That's not to say I don't see the importance of finasteride - clearly holding on to native hair is better, particularly if you have the "black hole" that is crown loss. But I don't see how you can really factor finasteride into the long-term planning of your hair restoration. If you started taking it when you were say 20, surely at age 50 there's a chance much of what you held onto would have degraded or disappeared entirely. At that stage there's really only a few options; either you have or have had one or more further surgeries to deal with ongoing loss or thinning, or you've got to accept full coverage is no longer possible and likely emphasise the frontal third/half and essentially leave the crown to its fate.

 

But my point is - those things surely have to be factored in even if you're on finasteride and it's working? Any good plan must always work on a "worst case" basis, so if a doctor tells you that you have 6,000 grafts but you're looking likely, or even just possible, you'll be a very advanced balding cases, they won't (or shouldn't) do a temporary fix on your hairline at 65 grafts/cm2 because finasteride is working. They would either recommend not going the HT route or having very conservative goals and maybe transplanting at 20-40% density, if that, and managing patient expectations. But if your doctor tells you that you have solid donor, that you might have more like 8 - 10,000 grafts and a relatively clear balding pattern appears to emerging, and that you're not under say 30 or 35, then I think a conservative but robust plan could be developed that would give a patient a good head of hair even if they lost all their genetically pre-disposed native hair, either because medication ceased to be effective or it was never taken.

 

I'm somewhat biased because this topic is very pertinent to my case. I'm 32, have been balding for about 6-7 years but I'm somewhat hopeful my pattern is emerging. Although I have definite MPB, the hairloss was fairly diffuse across the balding area, and the strong "stable" zone doesn't seem to have changed from aged 27 to age 32, even though I've thinned out a lot in the balding area. Although I've lost a good amount of hair, I calculate I have something around a 170-190cm2 area of balding. Even if every hair went from that area, if I could get something like 8 - 10,000 grafts over 2-3 surgeries (be they FUT and/or FUE) I would be reasonably confident that would equate to a pretty solid restoration that would meet my goals - by no means a full head of hair, but full coverage at a good enough density to look natural and full (assuming all other characteristics are good). Of course, if there was a good chance I was heading to more like 230-250cm2 of balding area (based on examination, miniaturization mapping etc.), and/or that my donor wasn't up to scratch, I don't think I'd start down this road even if I took finasteride and it worked wonders. Personally I couldn't rely on medication as part of meeting my goals - especially one as controversial as finasteride.

[Dr Blake Bloxham]

Hairsgone,

 

Excellent question!

 

The theory behind topical finasteride is twofold: 1) you will get more inhibition of the 5-a-R enzymes directly in the scalp by applying it ... directly to the scalp; 2) you will have less systemic absorption of the medication and, therefore, less systemic side effects.

 

Now, the real question is whether or not we can get it to effectively absorb through the scalp. It's actually very, very hard to get medication to absorb through our skin. It requires crushing it down to microscopic sizes and using a series of "vehicles" to help it pass through the skin and into the tissues. In fact, there are pharmaceutical companies and pharmacist researchers dedicated solely to finding vehicles for topical drug absorption.

 

It will be interesting to see what happens with topical finasteride absorption. We do, however, have one interesting comparison: the topical anti-DHT drug RU58841. It's a topical anti-androgen that has been trialed by a number of hair loss sufferers online. The theory behind it was similar: apply it to the scalp, get the anti-androgen properties locally, and avoid systemic effects. Unfortunately, many still suffered the same systemic side effects as they did with other anti-androgens (namely finasteride). This means there is still a good amount of systemic absorption -- probably because the scalp is just so damn vascular!

[chrisis]

Unfortunately, many still suffered the same systemic side effects as they did with other anti-androgens (namely finasteride). This means there is still a good amount of systemic absorption -- probably because the scalp is just so damn vascular!

 

Indeed, I have read cases of PFS that have occurred from RU58841, e.g.

 

From August 2011 to January 2012 I was taking topical RU58841 (not sure how many people are familiar with it, but it's a strong Anti Androgen that doesn't inhibit Alpha 5 Reductase). That is where things got worse. I noticed my testicles had shrunk about 25%-35% in volume, grew breast tissue, flaccid penile shrinkage, low libido, feeling cold, not interested in doing anything, anxiety/depressed.

 

Is it too late for me? : Member Stories

 

I have also talked to many guys experiencing side effects like heart palpitations, headache and brainfog from something as apparently benign as minoxidil - also topical. As minoxidil is not an anti-androgen, I suspect these side effects are due to its mechanism as a vasodilator.

 

I think in time PFS will be widened to encompass any anti-androgen, whether it's finasteride, saw palmetto, or topical agents like RU58441. It's all the same.

[chrisdav]

Bill,

 

This is an interesting topic.

 

I have been on Finasteride for around 8/9 years now with no issues at all. However, I do appreciate some do have issues with the medication.

 

 

Chrisis,

 

Out of interest, which European doctor are you a patient advisor for?

Edited August 5, 2015 by chrisdav

[nimrod]

Hi everyone.

 

I started losing my hair rapidly at age 17 and it caused me severe distress such that I become socially isolated and depressed, and would hardly leave the house. I then started taking Propecia at 21 after much deliberation and it worked WONDERS. Given this, I then had two hair transplants with Dr Feller who i found through Spex, one when I was 21 and another when I was 22. I am now 24 and have an amazing head of hair which has given the the confidence to completely turn my life around. I have not had noticeable side effects. I masturbate daily, normally, and am in good shape. I have anxiety etc but I think those come from other issues, no family/friends/love life/unemployed/ a physically deformity I have called Pectus Excavatum which has given me major body image issues for which I am receiving serious surgical treatment which has involved complications.

 

However, given this new information about long term effects (which was not available when I started taking it) I wish I had never started any of this, but I was young and didn't know any better. What should I do now? I would lose everything on my head if I stopped and I have a horrible strip scar. I have also finally found my passion in life, teaching, which I am now getting into and I cannot stand at the front of the classroom with THAT on the back of my head. Since I have already been taking it for 3.5 years is there any point in stopping now? or is any potential damage done. I feel that taking it until I am 30 might be a good idea, as it would give me the confidence to get my career going so that I can make a living. I am currently unemployed.

 

Please help, I feel so down and alone.

[nimrod]

Hi everyone.

 

I started losing my hair rapidly at age 17 and it caused me severe distress such that I become socially isolated and depressed, and would hardly leave the house. I then started taking Propecia at 21 after much deliberation and it worked WONDERS. Given this, I then had two hair transplants with Dr Feller who i found through Spex, one when I was 21 and another when I was 22. I am now 24 and have an amazing head of hair which has given the the confidence to completely turn my life around. I have not had noticeable side effects. I masturbate daily, normally, and am in good shape. I have anxiety etc but I think those come from other issues, no family/friends/love life/unemployed/ a physically deformity I have called Pectus Excavatum which has given me major body image issues for which I am receiving serious surgical treatment which has involved complications.

 

However, given this new information about long term effects (which was not available when I started taking it) I wish I had never started any of this, but I was young and didn't know any better. What should I do now? I would lose everything on my head if I stopped and I have a horrible strip scar. I have also finally found my passion in life, teaching, which I am now getting into and I cannot stand at the front of the classroom with THAT on the back of my head. Since I have already been taking it for 3.5 years is there any point in stopping now? or is any potential damage done. I feel that taking it until I am 30 might be a good idea, as it would give me the confidence to get my career going so that I can make a living. I am currently unemployed.

 

Please help, I feel so down and alone.

[mahhong]

Hi everyone.

 

I started losing my hair rapidly at age 17 and it caused me severe distress such that I become socially isolated and depressed, and would hardly leave the house. I then started taking Propecia at 21 after much deliberation and it worked WONDERS. Given this, I then had two hair transplants with Dr Feller who i found through Spex, one when I was 21 and another when I was 22. I am now 24 and have an amazing head of hair which has given the the confidence to completely turn my life around. I have not had noticeable side effects. I masturbate daily, normally, and am in good shape. I have anxiety etc but I think those come from other issues, no family/friends/love life/unemployed/ a physically deformity I have called Pectus Excavatum which has given me major body image issues for which I am receiving serious surgical treatment which has involved complications.

 

However, given this new information about long term effects (which was not available when I started taking it) I wish I had never started any of this, but I was young and didn't know any better. What should I do now? I would lose everything on my head if I stopped and I have a horrible strip scar. I have also finally found my passion in life, teaching, which I am now getting into and I cannot stand at the front of the classroom with THAT on the back of my head. Since I have already been taking it for 3.5 years is there any point in stopping now? or is any potential damage done. I feel that taking it until I am 30 might be a good idea, as it would give me the confidence to get my career going so that I can make a living. I am currently unemployed.

 

Please help, I feel so down and alone.

 

nimrod - Firstly try not to feel so down. If you are having no side effects then there may not be any reason to stop. It's a fact that millions of men are on Propecia, and it's also a fact that the vast majority of them appear to have tolerated the drug well, with no major or persistent side effects. Some of these men have been on the drug for 10 years or more.

 

There is nothing to definitely say that damage has been caused. Some men appear to not tolerate the drug well, or develop side effects, but we do not know if this is purely down to the Propecia or if there are other factors at play. Many other men, including many on these forums (such as yourself), have seemed to tolerate the drug just fine.

[LondonHTseeker]

If you've experienced no side effects I'd stay on it. Dr Wong told me himself that he's been on Propecia for 17 years with no ill effects.

 

I'm thinking of switching to Propecia after 6 weeks of Avodart use. I'm pretty sure the sides Im getting aren't psychosomatic, they're quite strong. The thing is I bought a 6 month supply, and I want to kickstart regrowth. But these sides are troubling.

[chrisis]

Bill,

 

Chrisis,

 

Out of interest, which European doctor are you a patient advisor for?

 

Hi chrisdav,

 

I work for Dr. Feriduni.

 

However, given this new information about long term effects (which was not available when I started taking it) I wish I had never started any of this, but I was young and didn't know any better. What should I do now? I would lose everything on my head if I stopped and I have a horrible strip scar. I have also finally found my passion in life, teaching, which I am now getting into and I cannot stand at the front of the classroom with THAT on the back of my head.

 

Hey nimrod,

 

The PFS Foundation are working on several studies which will hopefully explain what is going on and then we will all be in a better position. If I were you I'd be inclined to wait until then. I don't think it will be too long.

 

If you need anyone to chat to about your concerns, drop me a line. No need to feel alone

[chrisis]

If you've experienced no side effects I'd stay on it. Dr Wong told me himself that he's been on Propecia for 17 years with no ill effects.

 

I'm thinking of switching to Propecia after 6 weeks of Avodart use. I'm pretty sure the sides Im getting aren't psychosomatic, they're quite strong. The thing is I bought a 6 month supply, and I want to kickstart regrowth. But these sides are troubling.

 

Careful as you go. If you're sensitive to Avodart, then your body is telling you that you're sensitive to anti androgens. Why would you swallow another, even if inhibits 10 or 20% less DHT? It sounds extremely risky to me.

[LondonHTseeker]

Because I'd rather wait a few months to see if the sides subside than lose more hair. Losing much more hair is a nightmare scenario for me. At the moment I've just got to decide whether to stay on Avodart or swap to Propecia. I think I'll give it a week or two more on Avodart and see how it goes...

[chrisis]

I just don't understand why you think things will be any different with finasteride. It is the same type of medication and you're clearly sensitive to anti-androgens. A nightmare scenario can be a lot worse than losing your hair.

 

Of course it is your risk to take, but why roll the dice when the odds are not in your favour?

 

These names illustrate a true nightmare scenario:

 

Randall J. Santmann, 22 (1986-2008)

Patrick J. Ortiz, 24 (1987-2012)

John D. Pfaff, 40 (1972-2013)

Dr. Daniel M. Stewart, 37 (1976-2014)

Stephen E. Kenney, 41(1972-2014)

 

Podcast featuring John Pfaff's widow:

https://www.youtube.com/watch?v=xr7fBHuS86I

[nimrod]

Thanks,

 

When will the PFS be finished with their studies or have some results to tell us? As I have no side effects I am thinking of taking it for one more year as by then I should be in a stronger place mentally and emotionally able to cope with what could happen with respect to hair loss, or more.

 

Are there treatments available to reduce a strip scar? and laser off transplanted hair so make more natural looking?

[Dr Blake Bloxham]

Nimrod,

 

Most won't tell you to stop the medication if you aren't having side effects. As you've seen here, many individuals never experience any issues. Even if you did stop the finasteride and lost your native hairs, remember that the strip scar resides in the permanent donor region and wouldn't show unless you shaved this region. Who prescribed the finasteride? Remember that you can always talk to your personal physician about this and have him or her monitor you for any side effects. But I don't think you need to worry about scar treatments and lasering off the transplanted hair.

[chrisis]

Hi nimrod

 

Although I am in touch with people who work for the PFS Foundation, they keep their cards very close to their chest for legal reasons.

 

They have already released some studies, e.g. this meta analysis, which concluded that:

Available toxicity information from clinical trials of finasteride in men with AGA is very limited, is of poor quality, and seems to be systematically biased.

 

As well as supporting research which you can read about in their 2015 Annual Address, which was just released this week.

 

I think the bigger and most important studies from Baylor, Brigham and Milan will be published within the next 6 months to a year. It seems to me that awareness of PFS is already growing, and these studies will further this, in conjunction with legal proceedings against Merck which have already begun.

[Dr Blake Bloxham]

Chrisis,

 

So sorry to hear about those gentleman. Whatever the reason, it's absolutely tragic it ended that way.

 

Interesting about those other side effects from RU58841. I hadn't heard these before.

[Dr Blake Bloxham]

Chris,

 

Who is leading the study at Baylor? I've read some interesting PFS analysis from an endocrinologist (a personal favorite of mine) in the past, and I'm wondering if it's the same doctor.

[chrisis]

Chris,

 

Who is leading the study at Baylor? I've read some interesting PFS analysis from an endocrinologist (a personal favorite of mine) in the past, and I'm wondering if it's the same doctor.

 

Hi Dr. Blake

 

It's really great to read that you are interested about research into PFS and refreshing to experience this level of understanding and concern!

 

Who is the endocrinologist you're thinking of? The study at Baylor is being led by Dr. Khera.

 

I know a few people personally who participated in the studies and almost went myself, but they are focusing on participants closer to the University. There are also specific eligibility criteria to ensure the study is scientifically sound, for instance, anyone who has taken an SSRI does not meet the criteria. It took quite a long time just to get enough participants for the study, but as far as I know they have now filled it and are now working on testing the volunteers and the analysis.

[Dr Blake Bloxham]

Hey Chris,

 

Thanks for the kind words! Like I said before, I've just seen too many instances of this in person to ignore it.

 

I don't remember the endo guy off the top of my head. I'll try to look it up when I have a few minutes later today. The endocrine/hormone system and how it relates to different types of alopecia has always been a big passion for me! So I'll be very interested to see the outcome of some of these PFS studies.

[Dr Blake Bloxham]

UPDATE:

 

I just remembered who it was:

 

Dr Michael Irwig. He was the one who published the big study in the Journal of Sexual Medicine in 2012:

 

Michael Irwig | The GW Medical Faculty Associates

 

Persistent Sexual Side Effects of Finasteride: Could They Be Permanent? - Irwig - 2012 - The Journal of Sexual Medicine - Wiley Online Library

[chrisis]

UPDATE:

 

I just remembered who it was:

 

Dr Michael Irwig. He was the one who published the big study in the Journal of Sexual Medicine in 2012:

 

Michael Irwig | The GW Medical Faculty Associates

 

Persistent Sexual Side Effects of Finasteride: Could They Be Permanent? - Irwig - 2012 - The Journal of Sexual Medicine - Wiley Online Library

 

Ah yes. He was one of the first to speak publicly about the dangers involved.

and https://www.youtube.com/watch?v=D7K_Qwy22UU

[LondonHTseeker]

Chrisis,

 

So sorry to hear about those gentleman. Whatever the reason, it's absolutely tragic it ended that way.

 

 

 

Dr B says it for me there. Tragic as their deaths are, I doubt the reasons for their deaths can be definitively attributed to taking Propecia. It's not going to stop me giving Propecia a very good try. Yes, Propecia is risky. But so is life.