I am just curious if any PFS patients here are also physicians/doctors?
I am asking because doctors always seem to claim Propecia is a safe drug and if so, they supposedly wouldn’t hesitate to self-prescribe this drug to save their receding hairlines. Among all the doctors that do, some of them are bound to have PFS.
Yet, I don’t believe I have even read any story here of a medical professional, let alone a doctor.
@gents93 also works in healthcare, I believe ER but not 100% sure.
@dumbkid to be frank, the medical field just isn’t privy to our condition yet. It’s not that established in the medical field and it’s considered pre-mature to draw any correlation. Of course we know this condition better then anyone, because we’re living through it. My sister is a Pharmacist and graduated from a very prestigious Pharm D school. When I came to her after taking Finasteride panicking about what I had just done, she told me I’m overreacting and that I was basically being a hypochondriac. She even went as far as citing the exact studies that Merck publishes on their website about there being “minimal” side effects from the Indian Dermatology online journal of health sciences. This is at no fault of hers. This is how the system works, doctors and pharmacists only take what is published and heavily funded as being widely accepted. It wasn’t until I sat her down and started showing her case studies online where she realized that what’s in her fancy Pharm journals is nothing but crap. Those studies are often driven by institutional money and agendas that are motivated by profit.
i’m an RN and work in the ICU. going back to school for NP this year.
what Pete said is very accurate in regards to how the system works. in simplest terms it’s all about studies.
I am sure many physicians have gotten PFS.
On this podcast a physician with PFS calls in at 1:28:55
Interesting to hear him talking there. He clearly knows as little as anyone else.
JN is a doctor and recovered more or less with his protocol, he is a doctor in Australia here is his latest post about a Year ago:
JN1
Jan '17
Hi,
I haven’t been here for a long time. But to update:
Essentially I’m cured from the effects of finasteride. But the thing is, I’m no longer the same person. Where I was a highly distressed 21 year old sufferer, with pretty much every side effect imaginable, I am now an emotionally strong, happy, successful and healthy 37 year old. I still work as a full time doctor. I have returned here as I have yet more exams to study for, and I’m procrastinating terribly!
I have to start a new post here as Mew unfortunately ceased my thread under “members stories” section.
Succinctly, these are my thoughts/tips:, in no particular order…
I don’t believe in the concept of “PFS” per se. I believe the term PFS should be labelled “enforced unhealthiness precipitated by finasteride” as the symptom list is too huge to actually place under an umbrella term, but yes, Finasteride catapaulted me in awful health.
The only doctor who was of any benefit was Dr Greg Emerson. I follow his writings assiduously.
As Dr Emerson proved, the main ways of reversing the effects of finasteride are as follows
treat systemic parasites, yeast infections. You’ll find body temperature increases, thyroid status reverts to normal, and improved health ensues.
Optimise zinc:copper ratio. Imperative. I take 20mg zinc each morning, 2mg copper at night. It took me many years of experimentation to get to these doses. I have pyroluria (a zinc losing/vit B6 losing condition) and therefore my need for zinc is higher than average. Note I was born with this ‘anomaly’ (!) and believe it made me more susceptible to finasteride effects.
I take DHEA 25mg per day in 2 divided doses. I’ll be doing this for life as finasteride caused adrenal fatigue. Cortisol (product of adrenals) often recovers by itself but DHEA tends not to.
As DHEA aromatises into E2, I take anastrazole at about 1mg (one tablet) per week in divided doses. No sweat. This is a constant in my life and to be honest, DHEA is the youthful hormone, and I feel great.
I get as much naked sun exposure as possible. Check out the rise in T when you get sun on scrotum (? 300%)! Vitamin D is a must.
I exercise and do yoga 4 times per week. Note lifting weights boosts T, especially lower body.
I don’t have gluten or cow’s dairy in my house, although I enjoy a couple of beers every now and again, and eat what I want when I leave the house, in restaurants etc. I had a confirmed 4+ (maximum) allergy to wheat and cow’s dairy. These measures improved my health significantly.
Other supplements I take;
-magnesium (loads)
-Vit B6 (to replace my Vit B6 losing condition as above)
boron 6mg per day (a forgotten mineral)
5 grams fish oil per day
MSM
evening primrose (again, as Dr Emerson instructed me to…to treat my pyroluria)
I’m also an “overmethylator” (or undermethylator, can’t remember which), and Dr Emerson prescribed me a compounded formula, which contains niacin, Vit E and other B vitamins.
I drink freshly juiced beetroot juice and ginger every day.
My health status. Just to state the facts: I’m 37, very healthy, look great and feel great. Sorry, but it’s true. I’m not gonna mix my words and if sounds like I’m showing off, then I don’t mean to. I have a 21 year old girlfriend who is none the wiser about any past health issues, and yes, that means that my sexual functioning is excellent. Specifically, I get full strength erections whenever I want to have sex (which is normally on my terms), night time and morning erections, ejaculate is more copious than pre-finasteride (I actually feel better than when I was 19, although this is probably emotional). I don’t get spontaneous erections like I used to, or at least not full ones. But I can have sex for a couple of hours on end. Sexually I’m getting better every say, 6 months.
I’m lean and athletic and have the body of someone in my 20s.
To add, and this is the bizarre part; my head hair is returning. If I was to grow my hair, there’s be a thinner part at the crown, so I shave it and have a mini mohawk (which is quite shaved down).
What I conclude from the fact that my head hair is returning is that hair loss may well be a sign of underlying health abnormalities.
I clearly can’t say that one factor has been more important than any other factor, but the holistic approach as I detailed above has given me great health and weirdly, grown my head hair back (which I was never really bothered about since use of finasteride). I will say that many men here struggle with the concept that pathogens (parasites, yeasts etc) need elimination. My opinion is that this is a critical step.
I also believe that nothing will come out the research/foundation, or at least no cure. Not that the foundation isn’t well meaning. I guess the formalities have to be ticked off and the foundation is a formality. I genuinely believe the cure is as above, as I’ve highlighted in my recovery.
My whole aim was to make myself stronger than pre-finasteride. I think I’ve done this. I’ve worked so so hard. I refuse to lose.
Take care
-JN-
Hello everyone
I am in fact a physician but had never heard of PFS before it happened to me. I am older than most people on this site and I took finasteride for an enlarged prostate and not for hair loss. After PFS happened to me I talked with several colleagues including dermatologists and urologists who routinely prescribe finasteride and none of them were aware of the existence of PFS. The problem with PFS is that it is extremely rare. PFSfoundation reports that there are 15,000 documented cases of PFS worldwide and I estimate that over these years there have been tens of millions (or more) of people in the world on finasteride. That creates a big problem with the average physician recognizing or even being aware of the existence of PFS. Even if every physician is taught about PFS, most will go through their carrier without seeing a single case. The rarity of this syndrome also creates a huge problem with doing studies, getting them funded, doing clinical trials to find effective treatments.
After countless hours of reading about PFS in the 8 months that I’ve battling with it, I believe that the majority of PFS patients recover. I have read posts from PFS patients on this site who came back to write a final post after they recovered (eg Doctorsdoctor). Most PFS who recover seem to go on with their life and don’t stay on this forum. I have to say that I don’t blame them. This forum can be very depressing unfortunately and very little hope is found here. When PFS hit me very hard in May of 2018, coming to this site was always the worst thing I did as it seemed to destroy any hope I had of getting better. Every time I logged on and tried to find answers and hope, I logged off twice as depressed and hopeless than when I logged on. There is so much lack of information about what to expect, there is a lack of good treatment options, and a lack of understanding of how finasteride affects the pathways of our brain. In addition a lot of the treatments recommended in this site and even treatments recommended by physicians on PFSfoundation.org seem to be ineffective for a lot of PFS patients including me. I don’t need to explain to any of you how devastating and scary PFS is. The first 4 months of my battle of PFS my depression and anxiety were so severe that I would have welcomed death most of those days. I never considered suicide but had someone told me in the morning that I would die that day in an accident I would have been totally OK with that. Going into the 5th month, there was a mild decrease in the intensity of the symptoms which were still very painful but bearable. For the past 4 months life has still been painful but the mental anguish is not unbearable. 10-20% of the days I actually feel OK. This gives me hope that things will continue to improve. By all accounts, the first year of PFS is the worst for most patients and then things improve. One of the physicians dealing with PFS in Ireland told me that in their experience, most PFS patients recover within 2-4 years. It is a very slow process which requires tremendous patience. There are exceptions of patients whose symptoms last longer (and I think several of those patients are on this site) and some whose symptoms resolve sooner (within 1-2 years). It is rare to have full resolution of symptoms in less than a year. It just takes time for the brain to recover from the changes inflicted by finasteride.
The best advice has been given to me by one of the PFS experts in Switzerland who advised me to focus on making my life better any way I can (exercise, good food, family, friends etc) and not focus on a cure or medications to treat symptoms. I was so desperate to find something to turn things around and I tried a lot of things, most of which made things worse or didn’t help. After I focused more on the good things in life rather than how to fix my symptoms, things did become more bearable. I am taking some supplements and they do seem to help a little. There are also things tried by other members of this forum which helped them. It is just that reports seem to be mixed about everything without any consistently good treatments described.
Finishing I will say that there is a lot of (understandable) anger against physicians on this site. I was angry myself and I am a physician. I was angry because I wasn’t warned about this risks of finasteride, and there was no mention of this syndrome when I reviewed about potential side effects prior to taking finasteride. I can also tell you that after being in medicine for a couple of decades, the majority of doctors do care about their patients and do their best for them. I can tell you that there are hundreds of people that are alive today because I was able to intervene at a critical time when without a doctors’ help they would not be alive today. I have been able to improve the quality of life for many more. However there have also been cases of patients having side effects from medications I prescribed, rarely severe side effects. A lot of medications prescribed every day have the potential to cause serious damage, but they do help the vast majority of people. After a few months, my anger subsided as I realized that what happened to me was almost unavoidable. As I mentioned above I did not take finasteride for hair loss but for an enlarged prostate. I would get up at night and would be unable to use the bathroom due to obstruction to urine flow by my large prostate. I had the option of surgery which carries its own risks and then the option of finasteride and flomax. All options carried risks. I finally had the option to do nothing and have to wake up every hour to go to the bathroom and likely end up in the ER some nights with full urinary obstruction. I chose finasteride and paid a heavy price. I have one older friend who had surgery for the same problem and almost died from the surgery as he reacted to the anesthetic. I have come to terms with the fact that bad things are part of life on this planet and being angry does not help me.
I wish a full recovery to everyone here and I have no doubt that over time things will improve for every one. Be patient, focus on the things that are helping you in your recovery and don’t lose hope. Life will be better again.
I have also spent countless hours reading about PFS and I have reached the opposite conclusion.
so you recovered over time ?
i agree with sibelio here. the most people here tend not to recover just with time
agree with your conclusion Sibelio
Hi Giatriko,
Thanks for your lengthy reply! Please understand that I wasn’t trying to attack your profession. I am just dying to know how a typical physician would deal with this condition if he so unfortunately becomes acquainted with it as well.
You know how there are many “remedies” being suggested on this forum. Sometimes there’s just too much information and you don’t know how to act on it. I was just thinking a physician who is also a PFS sufferer would be the perfect guide filter out the bad from the good for the rest of us. Anyway, if I understand your opinion correctly, you think the best way to deal with PFS is to completely push it out of our mind and then let time do its magic? It sounds like a path that requires the least effort and if it works, all the better!
If what your colleagues have experienced is true, then we all must have lucked out. I mean, I have lost all the lottery tickets I have bought in my life and yet I managed to hit this one jackpot. It’s so hilarious (in a sad way) if you think about it.
It must be tough to have to work, study and deal with this sh1t at the same time. I hope you can achieve your goals and also recover from this nasty condition.
I studied math and statistics in college. Boy, I know how unreliable these statistical studies can be, especially in the fields of health science and economics.
Seriously doubt PFS is that rare since studies can be total bullshit. It’s hard to know what to trust out there.
Wouldn’t count on most doctors to give you useful information either. They’re too arrogant and probably being paid off by drug companies.
Hi. I am also a physician, and I was just as unaware of the existence of PFS as most other people when I started taking finasteride at the beginning of 2017. I knew about the possibility of some sexual side-effects due to the anti-testosterone effects of the drug, but when I found out that three of my friends had been taking it without any problems, I prescribed it to myself and took it for two months before the first symptoms struck. To cut to the chase, I went through the full PFS nightmare that is so familiar to everyone on this forum. None of my colleagues I talked to about it knew of its existence; some were supportive, but some dismissed it. I went to one of my psychiatrist friends for my sudden severe and worsening depression, and he had also never heard of PFS, but started me on antidepressants in any case. It likely saved me from the brink, although it didn’t improve any of the other long list of terrible symptoms I kept on experiencing. After a while my coping mechanism became to not discuss it with anyone, but simply to record my symptoms in a journal and to try carrying on with life. I also stopped reading about it, because doing so just made me feel worse.
Now, after more than two years, I’m gradually starting to feel better, and I’ve started doing some reading about it again. I have to agree with @Giatriko in that it seems like at least some sufferers experience improvement over time; what proportion I don’t know. But from personal experience it also feels to me that there might be light at the end of the tunnel. In terms of research, there is a broader consciousness in the medical world about the effects of drugs on certain genetic predispositions, and as our understanding of human genetics improve, I suspect that new progress will likely be made on this front, hopefully not too far in the future.
Different treatment regimens might work for different people, and I don’t think I can advise you on that at the moment. But I do hope you find what works for you. In the meantime, all I can say is good luck and don’t lose hope!
Thankyou for posting @DTvan, I hope you continue to feel better.
With the experience that you and other medical professionals have had with PFS, is there some way that you could collectively publish something for layman sufferers to show unsympathetic doctors?
I recently had the experience of explaining everything to a doctor who paid attention, made the appropriate noises, etc. At a subsequent appointment with a different doctor, I said “this will all be on my notes, I went through this recently” and was told “…no, there’s nothing recorded” - the doctor I saw obviously thought what I was saying was so clearly nonsense that she didn’t add it to my notes.
It’s hard work being taken seriously, as you allude to when you mention your dismissive colleagues, but I suspect that you are more able to be taken seriously than we, non medical, people are.
I agree with both Drs, the condition go from bad to worse and then slowly start to improve and take years.
I am talking for my own experience.
Dtvan what antidepressants were you prescribed by your friend the psychiatrist?
Hi, @betweenjobs. He initially started me on venlafaxine (Venlor), because I also had severe hot flushes (it is often used as an antidepressant in menopausal women, to also help alleviate their hot flushes!). I felt a lot better initially, but eventually stopped taking the meds due to its own set of side-effects, and relapsed into depression. He then put me on escitalopram (Lexamil), which took a bit longer to work, but did the job eventually. I’m very fortunate to have been amongst those people for whom the antidepressants really made a massive difference. Still on it now after a year, and feeling good. Libido is very low, but that could be from either the PFS itself or the antidepressants. I’ll put up with it for now, though, as long as it keeps me sane.