PFS my story 20 years of taking the poison unwittingly

General Discussion
#1

Hi guys
I’ve been trying to post on here for a while.

My story

I was on propecia for 20 yrs on and off Developed anxiety early doors and was prescribed paroxetene which worked well for years. 6 years in I was successfully treated for testicular cancer. Fast forward 16 years paroxetene stopped working and from then sides blew my world apart. Chronic insomnia, nil sebum, red,dry eyes, irritability, low mood, worry, extreme anxiety, suicidal thoughts, numerous cognitive issues, tinnitus, neuropathy, remaining testicular pain, frequent urination, pitted nails, gum recession and more. It was only last year via internet searches that it hit me. For the last 4 years ive tried everything “supplement wise” much of which is covered on the forum. I suffer from regular crashes resulting in a worsening of symptoms! I am at an all time low with my marriage in tatters, a gradual loss of a once huge freind base. NHS wise many tests have been done without any acknowledgement of PFS, I’ve been made to feel like a fraud. This site keeps me going and I hang onto the hope that I’ll recover one day, with worsening symptoms it feels more and more unlikely. Just wanted to share my journey as people around me don’t understand at all - cheers guys

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#2

Hey @LazarusRy,

Sorry to hear about the bad time you’re having. In your dealings with the NHS have you been prescribed anything that helped with your insomnia? I only ask this as it is the first thing you mention in your list of symptoms so I assume it’s one thing that weighs particularly heavily on your mind.

As you may already know, we will shortly be asking people to take part in a survey. This comprehensive (which is why it has taken so long) scientifically sound survey will help the condition to be recognised finally, which should help with being taken seriously. If you are planning on heading back to see a doctor soon, I can provide you with a link to a paper that you can show the doctor to help make them understand in the interim.

I am personally skeptical of a lot of the diets and supplement routines that are written about here but have you made a diary? It might be helpful to plot everything that you eat, how well you sleep, exercise, have sex and then try and spot any correlation. I personally avoid all 5AR inhibiting foods, you may or may not benefit from doing the same.

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#3

Hi Greek,

I tried two different SSRIs which initially helped “well” for a couple of nights only! However the price was an increase in anxiety, skin dryness, urination, headaches, agitation so on both occasions I stopped them. I also developed new symptoms neuropathy and daytime/evening sweats which have not subsided on cessation. In terms of sex with the Mrs. I have all of the usual symptoms, lack of interest, erections etc! The cognitive problems and insomnia are the worst,.certain foods and supplements which once gave me breif relief now actually aggravate so I avoid them.

#4

I will look to try the 5ar approach. Thanks Greek

#5

Posting via my phone, hence the clunky narrative, thanks for your early reply, advice and offer of the link. I have an appointment at the end of this month with “mental health” for an assessment so anything I can take with to strengthen my case/source of all of these symptoms would be greatly appreciated. Thanks again Greek
Regards Ryan

#6

Hi @LazarusRy,

The most recent literature reviews, linked below, have clear conclusions even in the abstracts regarding the broad and variable effects on certain individuals after use of finasteride. It may be useful to print and take in with you.

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#7

You’re very welcome, @LazarusRy.

Axolotl has helpfully given the links I would have offered.

Re: diet, it’s a bit of a pain but you’ll have to google everything you eat and “5ar”/“5ari” for a while. A good starting point is to look for articles that suggest foods that will help prevent hairloss by way of blocking DHT/5AR, there are quite a few out there. Just don’t eat what they recommend.

Re: SSRIs, a lot of people have had problems with them and as such you should refuse them if offered again. I don’t know which anti depressants are recommended for use by people here but I’m sure if you ask / search you’ll find some good answers.

Update: I defer to @Sibelio on SSRIs.

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#8

Hi bud you wrote 3 little letters that said everything to me mate NHS your a UK guy then mate ?

Join the club theirs quite a few of us on this forum

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#9

I have an idea mate that Could carry some weight and Would prove your case with the NHS.
I know a few UK guys on this forum we could all write you a letter with our details and telephone numbers this will prove you are far from alone.
It’s a one for all and all for one situation to show the doctors you are no fraud finasteride side effects are not in our heads this shit really happened.
I’m currently seeing an NHS urologist regarding steroid and finasteride use and persistent side effects ive seen 3 doctors mate none of which believed a bloody word i was saying if you ask me its demoralizing to say the least.
I wanted to be able to stop having to rely on viagra i had been buying privately the only thing that came of doctors appointment’s was prescriptions for viagra lol how ironic one doctor took a wild stab at things and said it venous leak this was the point that I asked for a blood test for hormone levels and Could i please see a urologist.
I waited weeks for the appointment with the urologist he examined me physically and looked at my blood test results and he suspects hypogonadism.
I’ve had to have a second blood test and another appointment with the urologist which is this Monday coming at this appointment i will find out blood test report and if testosterone is still at the lower end he will suggest some form of trt.
Will keep you updated …

Make sure you fill in an NHS YELLOW CARD to report the side effects Google it mate.

I call it the finasteride curse as it resembles being fuckin cursed !

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#10

It was unclear to me how much of your problems are caused by SSRI withdrawal. That by itself can give you life-shattering mental symptoms for years, and it definitely will if you have taken SSRIs for many years. Can you write a detail history of your psychoactive drug treatment? Obviously I wouldn’t recommend seeking help from psychiatrists, as they would want to put you on drugs for sure. However, if you have withdrawn too fast from an SSRI (anything less than two years of tapering is too fast), you should probably resume. But first do tell what your history is. There is another forum, by the way, that deals with antidepressants withdrawal. I do recommend it: survivingantidepressants.org

#11

Ive sent you a private message mate

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#12

Thanks mate

#13

Hi Sibelio, I believe all of my problems are as a result of propecia only. Prior to taking the drug I was a very positive happy, fun guy with full clarity of nind. Anxiety came out of nowhere “never tied it into the drug” neuropathy and sweats started as a result of taking two separate SSRIs for sleep back in October I don’t think tapering was appropriate for these. Though I was on paroxetene for a number of years I tapered in a very sensible way and don’t feel any or all of the other gradual symptoms were as a result of this. However one never knows with 100 confidence. Cheers Ryan