Finasteride ruined my life

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from ? United Kingdom

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Google.

What is your current age, height, weight?

41, male, 1.70 m.

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?

Finisteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

Around 1mg I guess.

What condition was being treated with the drug?

Hair loss

For how long did you take the drug (weeks/months/years)?

1 year

How old were you, and WHEN (date) did you start the drug?

37

How old were you when you quit, and WHEN (date) did you quit?

38, 2017

How did you quit (cold turkey or taper off)?

Cold Turkey

How long into your usage did you notice the onset of side effects?
I didn’t

What side effects did you experience that have yet to resolve since discontinuation?

Chronic fatigue, dryness all over, small fibre neuropathy like symptoms all over body. Myalgia, tinnitus, hairless, skin changes.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ yes] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ yes] Watery Ejaculate
[ yea] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[Yes ] Emotional Blunting / Emotionally Flat
[ yes] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ yes] Severe Depression / Melancholy
[ yea] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ yes] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[Yes ] Joint Pain
[Yes ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ yes] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ yes] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[Yes ] Increased hair loss
[Yes ] Frequent urination
[ ] Lowered body temperature

[ yes] Other (please explain)
Skin changes, rashes, neuropathy/parasthesia

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

Pregablin, citalopram.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

My life has been ruined by this. I get no support. I was an outgoing, full of life, super fit, super strong, healthy man. I was popular and was about to move to Spain to be with my beautiful girlfriend there. This was all ruined. I am about to lose my job too.

6 Likes
#2

I have pretty much the same symptomes. Its Sjogren Syndrome, caused by finasteride.

Took me quite some time to get diagnosed, because I am Male and have no antibodies in blood.

1 Like
#3

Oh no :frowning: I can’t believe this is happening. You have similar symptoms? Did you get a lip biopsy? The Rheumatologist I saw did mine and refuses to diagnose with Sjogrens. She just said it’s Sicca. Is there anything I can do?

#4

Three years into finasteride i developed fatique after being sick with a cold, couple of months later my mouth and eyes dried out totally. I also had some minor ligament pain in joints and less ejacuate (prostate is exocrine gland and stops producing prostate fluid in Sjogren).

I was low level inflamation on biopsy, but got the diagnosis anyway. Its up to rheumy.

In reality Sicca=Sjogren, there is no other patology that would cause sicca in men. And its a crap disease, with myriad of manifestations.

I’m not doing anything besides eye drops and avoiding strees, as there is not much effective treatments anyway.

I will do informative post on this condition later, as there are probably many not even aware of having it.

2 Likes
#5

Mine started with dry mouth and eyes too. It was sudden. The fact I now have small fibre active all over has pushed me over the edge. I don’t see much point in going further anymore. I am simply disgusted.

#6

I can understand you. Doctors dont take this disease very seriously despite it being life altering. SFN is well known symptome of Sjogrens, if you join some support group on FB you will find a lot of talk about it.

#7

And yet the expert Rheumatologist had never heard of the connection between Sjogren’s and SFN. She’s who the Sjogren’s foundation here in the UK recommended. I feel very let down.

#8

Hi – do you have other PFS symptoms? How was Sjögren Syndrome attributed to finasteride? Has anyone heard of this before, Sjögren Syndrome from taking finasteride?

#9

Here’s a paper on SFN in Sjögren Syndrome:

Sjögren Syndrome-Associated Small Fiber Neuropathy

#10

After SS symptomes i imediatelly stopped fin and 2-3 months after discontinuation i got some mild gyno and gradual decline in libido. Libido was then worsening to zero in next couple of months and its still there.

There were some other things like insomnia for some weeks and tinnitus… but this could be attributed to SS also, since many simptoms overlap.

#11

Also to be clear doctors didnt link SS to finasteride, I did a thorough search and there is nothing published on this connection. There is however quite a lot of papers linking derailed DHT production in exocrine glands to Sjogren.

In my opinion there are more factors leading for this to elude being recognised:

  1. It is rare side effect.

  2. Sjogren can take many years to fully manifest and people dont make a connection, so its underreported.

  3. In older men taking finasteride, drynes can be mistakenly atributed to age or medication (antidepressants, blood pressure meds…)

  4. Men tend to have negative bloodwork more often than not.
    etc.

However if you look closely even on this forum you can see a lot of people complaining of having no mucous, dry eyes, no saliva, dental cavities (this is one of early signs, of subclinical dry mouth)…

And on the other hand you have people with diagnosed SS not knowing why they have it.

For example a random talk from a Sjogren chat that really got me thinking, keeping in mind those were random people in a very small group:

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So given statistics on Sjogren show that it is extremely rare in men (14:1 ratio) with incidence less than 1 in 100.000 yearly and even less for YOUNG men I cant conclude it is not connected.

1 Like
#12

Interesting. Is there any scientific literature on etiology or genetics of Sjögren Syndrome?

#13

I found this paper:
Low serum levels of sex steroids are associated with disease characteristics in primary Sjogren’s syndrome; supplementation with dehydroepiandrosterone restores the concentrations

The participants were all women; however the focus is on sex steroids which might relate to Melcangi’s hypothesis about disrupted neuroactive steroid levels.

1 Like
#14

@strider @johnnyzenith Johns Hopkins has a whole center on Sjögren’s:

#15

I have a lot of these symptoms too, especially the hard to swallow sometimes symptom, dry eyes, and swollen saliva glands, and mouth ulcers

#16

Suing Merck should be your number 1 priority. Then seek help after you get your compensation to live your life and try therapies. Trust me I’ve been in it for 6 years and counting. Just Google the nearest lawyer and they’ll take care of everything for you. If you wait too long, typically more than a year, you can’t sue anymore.

Sue them because taking their money is the only thing that will make them listen. They deserve to support you after all this, as people have received millions for much less in legal cases.

4 Likes
#17

And what if you’re in the UK and a British citizen? How the hell do you sue?

#18

Almost impossible unless you have wads of cash there is also a huge sticking point if you took the generic version i.e Finasteride I believe Merck may be exempt in litigation because it’s not Propecia.

Update: That may not be true in all states:

#19

And if you’re not in the States? Basically there’s no way and I don’t have wads of cash.

#20

To be honest, I’m not sure. You can at least go for a free consultation to your nearest lawyer. I just regret not trying

1 Like