New member of the struggle

[Erik]

Where are you from (country)? Denmark & America

How did you find this forum Google search – Post Finasteride Syndrome

What is your current age, height, weight? 29, 175 cm, 76 kg

What specific drug did you use: Finasteride

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

What condition was being treated with the drug? Hair loss

For how long did you take the drug (weeks/months/years)? 4 days

Date when you started the drug? October 11th 2021

Date when you quit the drug? October 15th 2021

Age when you quit? 28

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

How long into your usage did you notice the onset of side effects? A few days

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

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

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

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

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

[ x] Other (please explain)
I have had songs playing in my head constantly and a loss of inner monologue

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? None

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)? None

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

Hi everyone. I’ve been struggling with PFS since I violently crashed half a year ago. It has by far been the most horrific thing to have happened to me in my life and can only be compared to being sent directly to hell. The electric burning in my brain, followed by the anhedonia and disconnection from the world, have been by far the most horrific symptoms for me. However, I have started to see improvement in key areas with some symptoms disappearing. Life is still very difficult.

The real reason I wanted to write this post after having avoided the forum for a long time is to provide encouragement and to motivate others to do their part. I firmly believe we will be able to restore our old lives through the efforts of patients like @axolotl and @Sugarhouse, rather than through random and dangerous solutions which have no scientific rationale. The time for experimentation is over. We need to find the mechanisms involved and work towards legitimate therapeutics.

I will be going on the podcast series next month and encourage everyone else to do what they can in the way of raising awareness and fundraising. There is no point living a mediocre, at best, or tortured, at worst, life longer than is absolutely necessary. There is a world of potential out there in terms of what can be done to move things forward, rather than wasting time and money on false solutions.

I encourage ever patient here to have faith in our community’s ability to pull together and find legitimate therapeutic means of getting ourselves out of this mess.

[Wintermoon]

Hey Erik,

Thanks for sharing your story with us and joining the podcast. I hope you’re doing well, all things considered.

Welcome!

[Erik]

Thanks Wintermoon. Glad to be in touch with others from the patient community and to help move things forward. Let’s get out of this!

[espresso]

I’m really sorry to read this has happened to you, I can definitely relate to this being the worst thing to ever happen in my life.

It sounds like you’ve got the right attitude in terms of how we collectively get out of this hell. I hope you’ll see natural symptom improvements as we collectively work towards getting out of this hole.

[Erik]

I’m sorry this happened to you too. My heart breaks for everyone in this community.

I really loved my life before this happened to me. Things were going so well for me which is why I took the pills. Loving girlfriend (still with me luckily), great family, friends, burgeoning start-up etc. I just wanted to optimise and keep my hair. I had asked the doctor if there were side effects and he just mentioned the possible “slight temporary drop in libido” which sounded like nothing to fear. Trusting him and the system have been the biggest regret in my life.

I have definitely improved, and have been told that is good news considering I’m “only” 6 months into this nightmare. I’m hoping a year and a half from now I’m one of the 80%+ recovered people.

But irrespective of my natural recovery, I am doing everything in my power to help our community get the attention and support it needs. I have a few things in the pipeline in terms of fundraising which I think could be significant. I am so pleased by the unity and strength of this community, and the excellent progress made by warriors like Mitch. I am confident that we will be fixed, and that day could come sooner than expected if we commit ourselves. It’s the only way for me to remain sane in this madness.

[loops]

So sorry this is happening to you man, but glad to hear you’re seeing some improvements.

I could not agree more with your comments. I do believe this condition is reversible or treatable. And I too don’t want to live with it longer than absolutely necessary.

You’re incredibly brave to participate in the podcast, something I haven’t been able to bring myself to do yet.

But after another sleepless night and reading your story, you’ve inspired me to contribute another €250. It’s the only way out.

[Erik]

Thanks so much for donating and for your words. It means a lot. I just recently donated but will contribute another 100 euros now in recognition of your donation.

I beseech you to do the podcast and to help humanise this issue. I know it’s not easy, none of this is. But we have done nothing wrong and have nothing to feel ashamed of. One day when we’re fixed and this nightmare is over, you will be proud to have made it through this hell and the rest of your life will be blissful. No one should have to suffer this. If we speak up and act we will make it.

The ADNP syndrome community consists of only 400 patients. Their small rare genetic disease community is on track for therapeutics in just 3 years time. Their condition was only diagnosed in 2013. We can make that a reality for our community too. I am sure of it. We just have to make our voices heard. Our lives are precious. If we each do just one thing each day for the community we will get there.

[loops]

Had never heard of ADNP syndrome. What an inspiration for a group like ours. You’re absolutely right about everything you’ve said @Erik. I’ll consider the podcast. Stay well man.

[Erik]

You too brother. See you around.

[espresso]

Your situation seems very similar to mine. I have a loving girlfriend, and I am distraught that I am putting her through this health problem, but I am very lucky that she is incredibly supportive. Family, friends, career, everything was going great for me too. I was told if I experienced any side effects that they would go away when I stopped. Instead they became an order of magnitude more severe after I stopped taking the medication. I too am confident that our situation can be fixed, but that will only happen if we all stick together and push in the same direction.

[Erik]

It’s the only thing that motivates me. I see you just recently crashed as well and that your symptoms are similar to mine in many ways. I also feel so stupid and distraught for having gotten myself into this nightmare when so many others have already tread this path. I really want to see a cure as soon as possible

[infinite]

@Erik how are your symptoms these days? Have you seen any improvements?

[Erik]

I have seen moderate improvements over the past year. But my life quality is still horrendous and unacceptable

[Balph]

@Erik Hey man, just wanted to see if the songs playing in head issue has subsided at all for you? Was this more prevalent when you first crashed? Cheers

[Erik]

Luckily this issue has completely resolved for me. It’s complete madness isn’t it?

[Balph]

Thanks Erik, that’s good to hear.