Scared, would like advice on PFS timeframe

General Discussion
#1

Hi there:

My story and questions will be all-too familiar to many of you, so forgive me if this is redundant, but after looking around on these forums for a while I figured it might just be best to ask my questions outright.

I, like so many others, was prescribed finasteride by my dermatologist after despairing over my rapidly thinning hair since late last summer. Already an insecure and worry-prone person, the impending hair loss was taking a heavy toll on my mental health, and I reasoned that doing something about it would help to put my mind at ease. I read about finasteride, and (again, like so many others) got the impression that the truly scary side effects were very rare and that the medication was overall safe.

I started taking it on February 6 of this year. Even within a few days, I noticed some mild ED and reduced libido. My skin also became a bit greasier. These effects were annoying but very mild, and I pushed on because I had also been informed that these often subside after a few weeks. But, being as worry-prone and obsessive as I am, I dug further into side effect information and quickly found more and more disturbing evidence of how much finasteride can impact the body.

Finding myself worrying more and more about the side effects, and not noticing them go away, I contacted my dermatologist and he told me to discontinue the drug. I took my last dose on February 26.

So, a total of 20 days, with 2 missed doses, was a total of 18 mg.

I was confident on stopping, based on my doctors advice, that the side effects would subside in a couple of weeks.

Since stopping, however, things have not improved, and have become even more frightening. While on the medication, I only noticed mild sexual symptoms. After stopping, these have persisted. They seemed to be getting better last week, but then got even worse over the weekend into this week. My penis seems to have shrunken and lost sensation, and I find it difficult to get/maintain an erection. When I am able to orgasm, it is weak and my erection dissipates extremely rapidly.

About three days after stopping the drug (March 2 or so), I also began to notice intermittent brain fog that has begun to interfere with my ability to function. It is hard to say if it is getting worse or not, as it seems to come and go throughout the day.

So, with all these symptoms, and the timeframe I am currently at (3 weeks on drug [2/6-2/26], 3 weeks since stopping [2/27-now]), here are my questions if anyone has any input:

  1. Is there still a chance these symptoms will go away?

  2. What should I pay attention to as far the dreaded “crash”? The brief improvement with my sexual symptoms last week was only moderate, and they didn’t rush back all at once, so not sure if that might have been it or not.

  3. What should I do? I am worried sick about this, terrified like so many others that I may have fucked up my life irreversibly because of my own insecurity, and it’s been sending me into a spiral of despair that can only be making things worse. What would any of your advice be on what steps to take so I can feel more in-control of this situation while I wait to see if things improve?

Obviously this is all made much worse by being in a state of quarantine due to the COVID19 pandemic, leaving me more alone with my own worries and also much less able to access my doctor and get advice. Just looking for some guidance and advice right now so I don’t completely lose my mind over this situation.

I have the utmost respect and sympathy for all of you struggling with this. Whether I get better or not, you can be assured that I’ll be doing my part to help raise awareness and get this irresponsible medication off the market. It is designed to be peddled to scared, insecure people like me who just want a solution to a problem (balding) that can be lonely and difficult, and it fills me with rage that so many other people might be tricked into a worse situation simply for trusting their doctor’s advice.

I look forward to hearing what any of you may have to say, and thank you for taking the time to read my questions.

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#2

Your still very early in your crash, give it a few more weeks/months before you see improvements. Any other sides like Brain fog or fatigue?

And I hope if you recover you help spread the word anything helps us!

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#3

Brain fog, yes, had it start a few days after my last dose and it’s been intermittent since then. Usually a few hours on, couple hours off, each day. Better at night and right in the morning after waking.

Fatigue as well, but I have pre-existing issues with depression so I definitely can’t distinguish between what was already there and what might me new since the finasteride.

#4

You fine bro, if your brain fog isn’t permanent in that matter, it’ll subside. Chillax, a lot of people here are scared, reading posts that engages to your fear ain’t going to help

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#5

Thanks for tour replies, both of you.

So it sounds like I just need to wait it out? I took the drug for three weeks, and it’s now been three since I stopped, so I wasn’t sure what I should be expecting right now. Is it common for people to recover after three weeks, or is it increasingly likely that this will be long-term (PFS)?

#6

there’s definitely people that recover after a few months, 3 weeks is nothing give your body time to adjust it may take a few months. Don’t touch any other anti androgens to treat hairloss that includes saw palmetto and ketoconazole shampoos, minoxidil ect. Don’t worry about hair loss it was the dumbest thing I’ve done in my life and I’ve been stuck with this for over 2 years. You should be fine I have good hopes you’ll get better soon.

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#7

Thank you very much for the reply and advice. I hadn’t even been aware that nizoral shampoo was also anti-androgenic, so I will avoid that as well.

I agree wholeheartedly on the hair loss thing. If there’s anything positive this scary (and hopefully temporary) experience has taught me, it’s how little my hair truly matters when faced with a much scarier health problem.

Thanks again for your reply, I know this forum can be a mixed bag given the variable experiences and feelings that members have, so I try not to dwell on here too much at this point. But it’s really helpful getting feedback from people that actually have some understanding of these side effects, and I hope that mine will subside soon.

Again, regardless of what happens to me, I’ll be doing what I can to help all of you, and the cause of PFS treatment.

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#8

I hope to keep updated on your situation as well. I am in a very similar situation. I took finasteride about 8 months ago and I only took 30 pills 30mg of it. I am still also having persistent sexual symptoms. I have the same feelings of regret over my vanity and I swear if this gets fixed I will be over my depression and other dissatisfactions in life in NO time at all. This has been way scarier than anything else in my life. There are sometimes stories from people on here who have recovered after many years. Since you and I both have taken this stuff only for a short period amount of time, let’s hope for the best that our bodies are able to recover in time.

#9

Update:

Now been 6 weeks since I stopped taking the drug, and things have unfortunately only gotten worse. Brain fog and vision problems are persistent, along with total lack of libido and sexual dysfunction. About 2 weeks ago insomnia also set in pretty dramatically, I only stay asleep maybe 2-3 hours each night, followed by shorter and shorter segments of sleep.

Having some basic bloodwork done this week to see if there’s any noticeable issues, but have already gotten the “it’s all in your head” treatment from my doctor due to my pre-existing history of depression. Not feeling very confident that anyone can help me with this.

I’m in a pretty dark place right now, and am struggling to accept that this may be how I have to live for a long time, possibly forever. Been thinking about suicide a lot, and while I’m not there yet, I don’t see how I can truly learn to accept this condition if it persists.

Does anyone have any advice for where I’m at right now? Suggestions, personal experiences, anything? I’m struggling and no one else seems to have answers for me beyond “it’s probably in your head”, and it’s starting to really destroy and optimism.

Thanks for everyone’s suggestions so far.

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#10

Some people recover within 3 months after quitting. Give it some more time. You might be halfway there.

#11

I’m sorry to hear this @Benthic and it’s sadly an all too common experience for PFS patients. We do have a resource pack for patients to give to their doctor, which can be found here PFS resource pack: letter and study abstracts for your doctor

At six weeks post cessation, you are still very early in the process. It’s still too early to say definitively if you have PFS. I posted in another thread recently about how time can bring improvements in this condition, particularly the first 6-12 months

Be assured that most people here know what you’re going through and you have my deep sympathy. We’re here for you man.

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#12

Update:

9 weeks now since stopping finasteride. Unfortunately things have only gotten worse. I barely sleep, libido and erections are essentially gone altogether, and the brain fog is so bad that I can barely function. I actually ended up in the ER earlier this week after passing out, they did an MRI and once again told me “it’s all in your head”. Embarrassing and expensive waste of time.

I guess I am struggling to find some optimism or positivity right now. For those of you who had a bad period like this, did it get better? How should I try to cope with this? I feel like my life is over. I would be lying if I didn’t say that I feel honestly like killing myself if this doesn’t improve.

Thanks for all your advice so far. Once I hit three months in a few weeks, I’ll be sure to fill out the survey.

Sorry to come back with only doom and gloom, but I have very few other people to talk to about this who aren’t actively trying to convince me it’s all in my head.

#13

Trust me on this my man…I was a lot worse than this…I lost all sensitivity over my skin, i lost my smelling, and tasting senses…I couldn’t even get a hard on even if my life depended on it…I was going to kill myself and was really 2 min away from doing it…
It gets better…You will reach a baseline that is certainly better than where you are…Sadly this baseline will be nothing like you usually were pre-pfs…But it is much better, than this horror you’re in now…
Please dont kill yourself, as we need more guys in our struggle to find a cure…Stay here and live and fight…Killing yourself might end your suffering but you will let hundreds and thousands of us down, as we really need Every single one…

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#14

Yes. But when I say bad period I mean absolutely critical, clinging on by my fingertips desperation. I too went to Accident and Emergency (a few times) and spent a day on an acute medical unit. The assessing doctor looked at me without doing any tests and thought I had Crohn’s disease. I had lost a lot of weight at that time. I also had brain fog so bad I could barely lift my head at points. My sleep was destroyed, I couldn’t stay sleeping for more than an hour or so at a time without waking, inexplicably (waking to extreme depression too). My symptoms actually got worse in some areas as the months went by. My vertigo went from bad to severe as the world around me started to tilt on its side in my vision, a few months after I crashed. What I’ve described here were just some of my symptoms.

I did and have improved from then though. It may become worse for you before some things become better, that’s how it went for me anyway. I’ve read so many patient reports in the last few years on this website and others and many, many times, it’s the case that people see improvements in the first 6 - 12 months. You just have to give it more time, as hard as I know that can be when you’re in the worst of it.

Never apologise for explaining how you feel on this website. This is part of the reason we’re here on this site, to support each other through this terrible disease. It’s not psychosomatic, obviously. Stay strong and keep us updated @Benthic

2 Likes
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#15

did you recover after 2 years? what is left for you?

#16

Nope never recovered still the same