My First Post: My Avodart Horror Story

[gabrielbartell]

I'm new to this forum and thought I'd ask for advice and share a cautionary tale. (One which is partially my fault, but anyway, lemme tell it.) I'm 36, I have no hair loss in the back, but I have a badly receding forehead (Norwood 3 or 3A).

My grandfather on my mother's side was bald, so I was always worried about hair loss, throughout my 20s. I basically had a high forehead with receding temples in my late 20s, and in my early 30s, I started to take Propecia, prescribed by a doctor in San Francisco. I took Propecia regularly from age 30 to 34. I had sort of a psychological pattern: whenever I was in a steady relationship and feeling good, I wouldn't worry about my hair (although I'd continue taking Propecia). When I had just gone through a breakup, I would worry about my hair and I'd usually find myself asking my 'hair doctor' about something else I could take -- implants, or Rogaine, or whatever. I briefly tried Rogaine during one of these periods, for about six months, but then I stopped because I got in a new relationship and, well, I was too proud to let my girlfriend at the time see my putting Rogaine on my hair twice a day. (Why isn't it sold as a dang conditioner? Sigh...)

Anyway, my hairline stayed more or less steady until I was 34. At this point... shortly after my 34th birthday, I went through a really bad breakup. I found myself going to my hair doctor more and asking him if he'd consider putting me on that new medication, Avodart, that I'd heard of? -_- He said "We *could* put you on Avodart, but I don't think you need it yet. The problem with Avodart is that you take it and then go off it, Propecia won't work for you anymore, and you'll lose lots of hair. Just keep taking Propecia and check in with me in a few months."

The problem came when I checked in in a few months, just to make sure I was 'holding the course'. My doctor said, "Oh, you've lost some hair." He asked if I had been through any stress recently and said that stress could trigger permanent (he actually said permanent, I almost wish he had lied and said temporary, so I wouldn't have freaked out so much) hair loss. Well, I was still stressing out about the breakup a few months previously. I knew in my mind that I'd never be 'less' stressed again, so I had no choice but to get on stronger medication. So I asked him to PLEASE put me on Avodart.

Anyway, I went on Avodart. After eight months in on the Avodart, my hair was holding steady, and (purely coincidentally, since she didn't know about any of my crazy hair nonsense, of course) I was back together with my ex-girlfriend.

Then.... the Avodart made me impotent.

Let me tell you: it sucked. If I had been straight-up suddenly unable to have sex, that would have been one thing; but the GRADUAL loss of function, in which I spent months with my sex life collapsing without realizing the reason for what was going on, was the worst.

Anyway, as soon as I realized what was going on, I went to my hair doctor and asked him to take me off Avodart. He reminded me that "if I went off Avodart I'd lose lots of hair," and instead he gave me a prescription for Viagra. My thoughts were basically, "Great. Now I am stuck taking TWO medications. This is ridiculous. No way I'm going to be stuck taking fricking Viagra at my age."

Then my girlfriend dumped me for the second time. The impotence had been a factor in the breakup. (I'm sure my own psychological issues as expressed in this post were a factor too, of course, but...) I was so annoyed that I went against the doctor's advice and went off Avodart. I mean, I simply *couldn't* stay on Avodart, even in a reduced dosage; it was associated in my mind with my breakup. And I could never be *sure* that I wasn't suffering sexual side effects unless I went off it completely (I had never had impotence problems with Propecia). I was sure I could handle whatever hair shedding might happen. So I cut off all ties with that doctor and got another doctor to proscribe me Propecia.

Unfortunately my first doctor's advice was correct, and I lost a *lot* of hair. At first I would wake up, wash my hair and think "Well, my hairline looks OK... the shedding is probably over by now... I guess going off Avodart wasn't a problem..." but then as the months went on, I thought, "Oh crap. I'm still losing hair." and "I'm STILL losing hair." In fact, although I've been taking Propecia consistently since then, I don't even know if the Propecia is having any effect anymore; my ex-doctor said that Propecia generally doesn't work on people once they've taken Avodart, I guess because their body has built up a resistance to the stronger drug. I basically walled myself into a corner: the Avodart made me impotent, but I couldn't go off it without losing hair. And so I went off it, and lost hair. I thought that having a working penis was worth any amount of hair loss – and frankly, it is – but it's hard to live with the knowledge that if I'd never gone on the stupid Avodart, I would have both a working penis *and* about an inch more hair on my forehead.

So, in short: my experience with Avodart was horrible. If you are luckier than me and you don't experience any sexual side effects, then more power to you. But for me, it sucked.

Of course, I have only myself to blame for asking my doctor to put me on it, but I'm still mad at my doctor for freaking me out by telling me I was suffering stress-based hair loss, and again for his crappy non-solution of prescribing Viagra.

If anyone has had similar experiences going off of Avodart, I'd love to hear about them! It's only been about a year, and I'm still trying to figure out if Propecia will do anything for me anymore.

[mattj]

I'm not entirely clear on the timeframe regarding the coming off of the Avodart, the starting again on Propecia and the length of time you've been losing hair for since then. Has this all occured in the past year? Have you really lost an inch of hairline since then?

Back when the doctor told you you had lost hair, that could've simply been Propecia losing it's effectiveness, which does happen, rather than stress.

Have you tried taking a smaller dose of Avodart?

[gabrielbartell]

Sorry, I exaggerated about the loss of hairline. It is more like 2/3 inch, all in the frontal hairline.

I took Propecia for four years before the stressful period in my life during which my doctor told me that my hair was receding. After that, I took Avodart for seven months. Following the onset of impotence, on my doctor's advice, I switched to a half dose of Avodart, plus some Viagra, for four months. I then got frustrated and went completely to Propecia. It's been 18 months since I went back to Propecia completely. Most of the loss took place between five and nine months after I switched to Propecia.

My doctor did tell me to try taking a half dose of Avodart in addition to Viagra, but I couldn't stop the *suspicion* that the half dose of Avodart was still effecting my sexual ability, so I (foolishly?) went completely back to Propecia to make sure I was getting maximum sexual ability. And I did see some sexual improvement on a half dose. But I couldn't stand knowing I was spending $100+ a month on expensive medication which hadn't caused my hairline to grow back (since Avodart & Propecia are more of a prevention thing than a cure thing, at least they were for me), and which, from personal experience, *might* have been damaging my sexual ability.

I guess you could say this is a story of what happens when you make decisions to stop taking your medication while you're clinically depressed. :/ But it did suck to feel like I was "forced to take the impotence-causing drug Avodart for the rest of my life."

[mattj]

It sounds like the loss may have stabilized then. If you're a NW3 now then things aren't too bad. It might not exactly help to have an anonymous guy telling you your hair isn't bad - hair he hasn't seen - and I know some NW3s look better than others, but you're still low down the NW scale and at age 36 things could be much worse.

Yours is definitely a cautionary tale against jumping on a powerful drug like Avodart unless it is really needed. I would stay on the Propecia just in case it's helping.

[gabrielbartell]

It sounds like the loss may have stabilized then. If you're a NW3 now then things aren't too bad. It might not exactly help to have an anonymous guy telling you your hair isn't bad - hair he hasn't seen - and I know some NW3s look better than others, but you're still low down the NW scale and at age 36 things could be much worse.

Yours is definitely a cautionary tale against jumping on a powerful drug like Avodart unless it is really needed. I would stay on the Propecia just in case it's helping.

Yeah. Thanks for the kind words!

Now that I think about it, I was also clinically depressed when I decided to go *on* Avodart, not just when I went off it. So it was a mistake made in haste both times. Not that I'm not taking responsibility for my decisions.

[Fixed by 35]

I don't agree with your doctor that taking Avodart means you can't go back onto Propecia later on. My hunch is that it's men for whom Propecia never worked sufficiently well who go on to Avodart that would have problems switching back. You yourself said you began to lose hair before you started Avodart. I don't believe the loss prior to Avodart was stress, I think it's more likely that Propecia was just no longer working as well.

However, I do understand the concerns around both drugs and frankly I'm considering giving them up. I've decided that the best thing to do now is wait for something better, and safer, to come along. I'll still use minoxidil and ketoconazole shampoo, I'll take saw palmetto and beta sitosterol and maintain what little I can until then. If all else fails, I'll wear a wig. I have a theory that about half of men over forty with a full head of hair wear a wig anyway.

[doinmyheadin]

Hey Mattj,

Regarding propecia, I am 32 years old about a norward 3, I have been on propecia for 9 months now, Im not sure if its working I am still losing on average about 50 hairs everyday when I wash my hair (in my hand and in the towel).

I have never tried monixidile and was thinking of switching to avodart. Should I be losing this amount of hair if propecia is working? Does your clinic (Dr Rahal) have many people on avodart? I have read stories of big sheds on avodart that dont recover from that are scaring me and obviously the erection side of things is a worry too.

What percentage of people does avodart work for? Also one other quick question is Dr Rahal trialing Acell currently or in the near future for strip scars and or grafts?

[mattj]

How fast was your hairloss progressing before you started Propecia? How long have you been a NW3?

It's really tough to judge whether the amount of hair you lose is just normal for you or a sign that your hairloss is progressing. As you know, everyone's hair goes through cycles where it is shed and then replaced by a new hair. When we wash our hair this will naturally be a time when loose hairs are dislodged and rinsed free and we will notice them, especially if paying close attention. I am skeptical of those who say they lose no hairs in the shower.

The amount of hairs I see floating in the tub after a bath would alarm many guys suffering from hairloss, but this has been happening for as long as I can remember, and I haven't really seen any change in my overall hair density or hairloss pattern in the past 5 years.

Avodart is a strong drug and doesn't have FDA approval for use in MPB. Dr Rahal does have patients who are using it and apparently doing fine. The studies show that it is more effective than Propecia, but there is greater incidence of side effects. It's only really something I would choose as a last-ditch attempt to keep my hair if Propecia failed or lost effectiveness. I think you should give Propecia a full year while keeping a close eye on actual changes in your hairline position and overall density before deciding what to do next. I'm sorry I can't be of any more help than that.

Dr Rahal is keeping a close eye on Acell, for the time being.

[doinmyheadin]

I have probably been a norward 3 for about 3-4 years maybe. Before that I had receeded to about a norward 2 from the age of 23.

I am 32, about 3 years ago I started noticing hairfall which I dont think I ever have really noticed before e.g finding hairs in my towel when drying hair, this is when I started to think about hairloss. I know the top and crown has thinned out a bit over the last 3 years before that I always had ridiculously dense hair. It is still reasonable, but starting to worry with all the hairfall and I know the top and crown are alot thinner then they used to be.

Do you use minoxidile is it worth the greasy hair. And Ive read you can have big sheds when on minoxidil too.How many hairs would you say you loose in the bath each day?

[mattj]

I have been known to count hairs in the bath. I see maybe 20-30, with more on the towel and others I no-doubt miss.

I have avoided Minoxidil as I don't really want to commit to religiously applying lotions to my hair. I would probably change my mind if my hair worsened, though.
You can get sheds on Minoxidil as well as Propecia. Your shedding apparently pre-dates your using Propecia, but if you've thinned only recently then there could be a chance that you went through a Propecia shed and will see some thickening.