Propecia losing it's efficacy after 20 plus years

[bsg007]

Hey everyone,

I've been reading this site for some time. I have been obsessed with hair loss since I was 14-years-old (I am now 40). My maternal grandfather was completely bald. My father is a NW 1.5-2 at the age of 70. Two of my three younger brothers were completely bald in their 20s. I started taking propecia twenty years ago when a friend of mine told me I was thinning in my crown region. She was probably pointing out a cowlick, but this prompted me to see a dermatologist, who started me on propecia.

I have basically taken propecia daily for the last twenty years. There is little doubt in my mind that it has curbed my hair loss. I recently saw Dr. Shapiro for consideration of a hair transplant to fill in my temples, and he felt I didn't need a hair transplant. He characterized my hair as a Norwood 1. To this end, I do feel that I have lost a significant amount of hair over the past six months, including the two months since I was seen by Dr. Shapiro. The hair is miniaturized, and my hairline has receded. I would call it a Norwood 1.5-2 to be honest. I went through a tremendous amount of stress the last 3-6 months which may be contributing to my hair loss, but I am concerned the hairs I am finding are miniaturized and I am seeing diffuse thinning. My wife thinks I'm crazy, but I firmly believe nobody knows your hair like you do.

I joined this blog for a couple of reasons. First, I felt my experience on propecia may be useful to some of you. Second, I am having some issues now that I would like some advice on.

I never had issues with libido while taking propecia. However, it did drastically impact my sperm count, morphology, and motility. My wife and I had difficulty having children, and I had a formal sperm analysis. My sperm count while on propecia was about 17 million (normal is 20-200 million). My morphology and motility were significantly abnormal. The urologist I met with told me to come off of propecia for 2-3 months and then be retested. I did so and my sperm count increased to 40 million. My motility improved, but my morphology remained abnormal. My sperm DNA fragmentation index was normal. Ultimately, we had twin boys via in vitro fertilization, and I immediately went back on propecia. To this end, I will say that we had a female fertility issue, so it's unclear to me if I could have conceived a child on propecia or not. I did see very mild hair loss while I was off propecia that started about three weeks after I was off the drug.

When I was off of propecia I did realize a few things. Propecia clearly blunted my orgasms, as the orgasms I had while off the drug were profound relative to when I was on the drug. It also reduced the size of my erect penis by about 1-2 inches. Fortunately, I was fairly large to begin with. I'm not tooting my own horn here, but I'm just trying to be as informative as possible for all of you. One weird symptom I had on propecia was I would intermittently get this eerie feeling I was dying when I would sleep at night. Indeed, this feeling would wake me up from a cold slumber, and was really freaky. I haven't had this feeling for over a year now.

I am now 40 years old and I have noticed that my hairline has been receding slowly the last several years. However, as above, I've recently noticed rapid hair loss in the context of several other symptoms. First, my crown has been intermittently tingling and my scalp feels oilier than normal. My libido, which has always been excellent, has been on overdrive of late. My face has been very oily and I've been developing sebaceous gland hyperplasia on my nose and face at what I feel is a relatively rapid pace. I can't help but wonder if my testosterone level is elevated at this juncture due to inhibition of DHT production, but this seems odd so late in the game. Has anyone else experienced anything along these lines?

For the experts in the audience, I am wondering if I should change my propecia to dutasteride at this time? I don't want to take minoxidil, and nizoral caused a massive shed for me within days. I would love to hear from people who were on propecia and made such a switch due to propecia no longer working. I would also love to hear from people who have been on dutasteride/avodart for some time. In addition, I would like to know if anyone else has developed oily skin/enlargement of their oil glands while on the drug.

I am not a dermatologist or hair transplant doctor. I would be willing to share my propecia experience with any and all of you. I can tell you that I feel it has worked for me for nearly twenty years. Take care...

[HTsoon]

You couldn't have children normally due to propecia?? This is concerning and unsettling, did you confirm with your urologist if it was the propecia or maybe you were just born with less sperm?

Edit: I just read it was a female fertility issue.

[bsg007]

No that's not right. As I said, we had a major female fertility issue, which was probably the culprit. Yet, our IVF specialist wanted to ensure we optimized our chances at getting pregnant by dealing with my issues as well.

[bsg007]

Oh, and it was definitely propecia that impacted my sperm. As i said, after only two months off the drug, motility and count normalized. There is no question the drug can adversely affect sperm.

[King0]

Wow u lost 1-2 inches of length.. considering im small average size if i lost 2 inches due to propecia my penis would be useless.. are you sure your loss of length was from propecia or just genreal aging?

I am scared for life now

Btw did you say you lost size while ON propecia or while you went OF propecia

[Soonbald]

wow Reading your story has put me off 100% to even try finasteride for a third time..just not Worth it in the "long run"...im just 5,5 to 6 inches cant afford to lose length and all the other stuff u told... just wanna ask did you have ANY sort of Eye problems while on finasteride for the last 20 years? no dryness? no blurriness or worse Eye sight? no blocked Eye glands nothing? I get severely dry Eyes just a month into finasteride I know I cant tolerate this drug...

[GNX]

yea cause that shit is TOXIC to ur body! and its not the end all be all either of course ur gonna start losing ur hair its not some magic pill that keeps ur hair forever it simply slows down the process but the penis shrinking size thing has absolutely nothing to do with propecia that retarded sounding

[bsg007]

Wow u lost 1-2 inches of length.. considering im small average size if i lost 2 inches due to propecia my penis would be useless.. are you sure your loss of length was from propecia or just genreal aging?

I am scared for life now

Btw did you say you lost size while ON propecia or while you went OF propecia

My erect penis was 1 to 2 inches smaller on propecia

[bsg007]

I did have occasional blurred vision but that was generally fatigue. I did not have other eye issues.

[RU58841]

For the experts in the audience, I am wondering if I should change my propecia to dutasteride at this time?

That's usually what people do in your case, yeah, or increase the propecia dosage.

As for the symptoms of increased libido, oily skin and scalp...those when seen together are usually accused of being symptoms of reflex hyperandrogenicity caused by propecia. Unfortunately, so is everything else, because everybody's understandably fearful that they're taking a drug that's actually making their hair worse. As for why it's happening now after all this time, who really knows, but you wouldn't be the first.

I wish I could make a suggestion but that's something that doesn't seem to happen commonly enough to know what the best course of action is...

[bsg007]

Thank you so much for your input. I tried avodart for two days, and just couldn't tolerate it. In addition, I think it tore apart my hairline, even after only two days. I think I'm in a downward spiral at this point, and I'm trying to get ready to be pretty bald.

[HTsoon]

Thank you so much for your input. I tried avodart for two days, and just couldn't tolerate it. In addition, I think it tore apart my hairline, even after only two days. I think I'm in a downward spiral at this point, and I'm trying to get ready to be pretty bald.

Bro after the side effects you've experienced how could you even consider the drug any longer? Id rather be bald then have my penis 1-2 inches smaller, unless you're hung like a horse and have inches to spare.

[Njshed]

Bsg, how are you doing now? I’m also on prophecia for 20 years and over the last 3 years have seen hair loss. I’ve tried adding rogaine but I can’t tell if it’s helpibg or hurting. It certainly isn’t doing much if it is. I’m considering increasing the finareride dosage. I’m afraid of avodart. Does anyone have thoughts?

[bsg007]

follow-up per request

Njshed,

I haven't written on this blog for some time, but I felt obligated to do so since so many people helped me, and you find yourself in a unique position that others simply do not. There are not a lot of people who have been on propecia for twenty plus years.

Shortly after I wrote my initial thread I began to have symptoms that were undoubtedly related to propecia. I had been having them for years, but never attributed them to propecia. These included insomnia, rarely getting true REM sleep, anxiety, melancholy, etc. Propecia was still kind of working for my hair as I wasn't rapidly losing my hair at that time, but I was slowly receding and my hair was becoming finer. I added avodart to the propecia, and took avodart for two days. I literally had no penile sensation for a week following the use of avodart and had a level of fatigue I have not felt since. I couldn't even get off the couch. I could barely get through the day for weeks after taking avodart, due to how long the half life is.

I am aware that people believe many of the symptoms individuals attribute to propecia and avodart are psychosomatic. I guarantee in my case they were not, but I am not writing this to dissuade people from taking these drugs to save their hair. I am extremely vain, and I get it, but I will say that people would likely feel better if they stopped propecia for one month even if they feel they have no symptoms. I am guessing they would have less fatigue at the very least.

To get to your question I will say a couple of things. On propecia, towards the tail end of the twenty initial years I was on it, as per my original post, I felt my hair was receding slowly and was getting finer in caliber. I ultimately stopped the drug for fifteen months after I wrote that post. During that time I went from a Norwood 1 to a Norwood 1.5, but I had lost a lot of overall density. As I said before I am vain and this freaked me out. During the fifteen months I tried to go back on propecia twice, but my symptoms came back fairly quickly. Indeed, off the drug, although it took some time, my anxiety, energy level, insomnia, etc., improved. In fact, I can tell you the best sleep I recall having in the last twenty plus years was towards the tail end of that fifteen months. Unfortunately, my vanity ultimately won out, and I bit the bullet and went back on propecia. I was on the drug at 1 mg once daily for the last 17 months, but quit about five days ago for good. To this end, what shocked me when I initially resumed the drug is that my hair improved in terms of quality in the first several months, but worsened fairly quickly thereafter. In fact, at about two years after I initially stopped the drug (I had been back on the drug for about nine months at that point) my hair started to significantly recede. I am now a Norwood 2.5 and diffusing, and I feel that going back on propecia did little to stymie that. Even if it did I just can't stay on the drug any more.

In fairness to propecia I will say that some of the hair loss I experienced over the last several years has likely been exacerbated by stress, trying Rogaine, being off the drug for fifteen months, etc.

I have read numerous posts on individuals who quit propecia. I know it is stated that one loses their gains 3-12 months after stopping the drug. Although that is true to some extent, I feel that one will not truly know the true impact of stopping the drug for about 2-3 years after stopping the drug. I am guessing that once DHT is reintroduced to the hair follicle you may go down a slippery slope in the form of miniaturization that you may not be able to stop even if you go back on the drug. During this last time I was on propecia I did try minoxidil and I found that it generated dark circles under my eyes and my face felt "fatigue" within two weeks of using it even at 5% of the foam applied once nightly.

There are some who report not losing hair after stopping propecia. My feeling here is that, unless they are reporting their hair situation after being off propecia for 2-3 years, they don't really know what impact stopping propecia has truly had yet. If they have not had hair loss for years after stopping propecia then they were likely never balding.

At this point I am 43-years-old. I am done with propecia, avodart, minoxidil, and nizoral (I used this briefly, to no avail). I think propecia saved me for many many years, and if I never stopped, I would likely be better off than I am now, but I couldn't tolerate the drug anymore, and I don't feel much would have changed. I was very fortunate to have had my hair for so long and lived a very full romantic life. I modeled part-time for years and propecia likely facilitated that. However, my time with propecia has run it's course, particularly as resuming the drug over the last seventeen months hasn't done much. Of course, it may have slowed the loss, but it certainly didn't help me regrow any hair over the last seventeen months. I think there is some truth in the notion that, even though testosterone, and by default, DHT, decrease with age, hair follicle DHT sensitivity increases. I suspect this accounts for why the percentage of men who are noticeably losing hair increases with age, and why people can go from Norwood 1 to Norwood 6/7 even in their 40s, although it is more likely they would go to a Norwood 3/4 in this regard.

In terms of how to advise you I'm not sure I have anything I can tell you that would be of use. I can tell you that as I got older propecia had a greater impact on me. Towards the end of my using the drug I literally couldn't remember simple things, was constantly fatigued, had marked anxiety, had difficulty with erections, etc. I am confident this will all normalize as I have stopped the drug, but it will take time. I do feel there is truth to the notion that the side effects of propecia are more common in older individuals as their DHT is already lowered by age.

If you are handling propecia well and you are slowly receding you probably should stay on it as it is likely holding your hair loss at bay to some extent. If you have are having symptoms I would be very careful with avodart due to the extremely long half-life of the drug. If you are not having symptoms you can consider avodart, but I suspect this will not do much based on all that I have read on the blogs (I have read every post on this possible). Almost nobody ultimately reports having success with avodart, and the risk/benefit ratio is way too high. Moreover, you will likely have a shed with avodart that you may not recover. The theory here postulated by some, true or not, is that avodart causes an increase in testosterone (DHT decreases significantly), and that the hair at the hairline is more sensitive to testosterone than hair elsewhere on the scalp. I haven't really looked at the data to see if there is a lot of truth to this. Of course, you can try rogaine, but you need to be prepared for an initial shed, which is common with the drug. In addition, you need to stay on it for life as any hair you grow or retain due to the drug will fall out after you stop it. Some individuals tolerate Rogaine well, and others, like me, do not. I didn't like what it did to me in terms of circles under my eyes, aging of my skin, and headaches. Nizoral is a reasonable adjunct to your treatment, but I don't think it is that useful if you look at the studies, and it can also cause an initial shedding.

One trick I have used for years, in the event that you are not already, is to blow dry my hair in the morning. I have very curly hair and when it's wet it looks terrible (looks like a diffuse Norwood 2/3, but when I gel it and then blow dry it, largely to eliminate much of the curl, you would think I was a Norwood 1/2 with medium to high density, although this is getting much harder to get away with. In fact, I am probably down to my last couple of months in this regard.

You can certainly try concealers, but I have no experience with these. A lot of people have tremendous success with these, and this could buy you ample time depending on how fast your hair loss is proceeding.

Ultimately, genetics at this time will always win out. I don't think propecia is a panacea that will work forever except perhaps in those who were likely to bald slowly genetically.

In terms of new drugs/prospective treatments, I looked into all of the anti-androgen (e.g. CB, RU, etc.), but I didn't try any of them. Breezula will not come out for years, and is essentially CB. You could try and get this off label as it is sold online, but I don't have any experience with this (there are posts on this). The information I have seen on Brotzu lotion makes it seem like snake oil to me. I don't feel setiprepitant, latisse, etc., are game changers based on what I've read. With all of that said I understand why people try these drugs, and you may feel differently than me.

My favorite website for hair loss therapies is a site that you can google that talks about a hair loss cure by 2020. This is a great site as well. Unfortunately, as it always easier to retain hair than to regrow it, I think my hair loss has won the race, but I had a good run.

I hope this information was useful to you Njshed. Maybe someday hair cloning and subsequent hair transplants in that context will become a reality and constitute a viable solution to hair loss. At this time I will not consider a hair transplant as my hair loss is nowhere near stable, I don't feel that hair transplants for higher Norwoods look very good, I'm scared of the scarring, I would rather wait to see what happens with hair cloning, etc.


I wish you well.

[thecomebackkid]

Hi, bsg007. I really hope you're still around, as I'd very much appreciate an update on your situation. I'm in exactly the same situation as you now and very worried about it. Did the greasy hair/sebaceous gland hyperplasia you developed resolve? It would be great to have a chat with you.