First post after 10 years of uncertainty.

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 (country)? Germany

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 search

What is your current age, height, weight? 25, 6 foot,

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
30 mg for 14 months

What condition was being treated with the drug?
Mild to moderate acne

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

14 months

Date when you started the drug?

Don’t remember, somewhat end 2012

Date when you quit the drug?

Early 2014

Age when you quit?

17 close to being 18

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

Cold turkey

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

Side effects appeared right away. Didn’t connect my sides to the medication until I was off it and approximately 1 year after the crash. Took me much longer to be sure etc.

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

Libido loss, morning erection loss,
Chronic joint pains, injuries,
Periodic Depression, depersonalisation, adhedonia, chronic pain, brain fog, suicidal ideation,
Blurry vision,
Loss of feeling in genitals,
All kinds of other issues with low energy etc.

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
[x ] Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
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
Severe Depression / Melancholy
[x ] Suicidal Thoughts

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

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

Other (please explain)

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

Took the usual route with different supplements, psychotherapy, doctors visits that thought I had different diseases.

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)?

My test is 450, estrogen extremely low, dhea on the high side, progesterone high, shbg low, vitamin a still slightly elevated,

Anything not listed in the about 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.

Hey everybody ‚

I was in active denial for a long time regarding the whole post drug syndrome story.

Mostly since it happened to me at a young age and the docs always told me my symptoms would be of psychological nature and therefore I was torn between I have PAS and phases where I thought something else might be wrong with me, which also eased my mind a bit.

It’s close to 10 years now since that whole crap started. Took the medication originally since I was self conscious about my skin and thought I would have a shot with woman and issues at school.
So could say I was young, dumb and broke.

Unfortunately I had no doctor guidance and basically took the drug on my own for the whole time being.

I felt terrible while on the drug and in retrospect I lost my libido, morning Erections early in the treatment, but didn’t recognize since I was busy with life I guess.

I felt terrible psychologically during the whole treatment and underwent some personality changes to a more depressed phenotype, but attributed that to being tired and playing a lot of sports at the time.

After treatment like many of us the side effects regarding tiredness and joint pain went away.

My libido etc. and adhedonia, depersonalisation was still there Full blown.
Went to my primary care physician since I figured I had a vitamin deficiency but all came back good.

I remember working that summer and being tired and feeling the need to sleep a lot during my breaks.
In Winter my acne came back which stressed me out and my joints acted up again, as well as me getting stomach problems.

Went to a gyno and told her my issues. She pointed out to me that my issues could be caused by mental issues.

At that moment I felt a shock through my whole body and made the connection and was reading up too much. Back then there was a forum entry on acne.org which was worse in terms of hopefulness than this page is sometimes.

I went into a deep depression and thought about suicide while reading up on the forum during my free time.

Looking back I wish I did many things different when it comes to handling the situation and life in general.

So maybe I can help someone out on here, since I’ve been there and done some wrong things.

In the last years I handled to live a relatively normal life and doing my degree more or less successfully and finding a partner.

My biggest issue is my joints breaking down, and I’ll probably soon be diagnosed with a rare genetic disorder that could be partly responsible for my joint issues.

I still think the accutane is the main reason for nearly all my issues since I played semi professional sports before I took the hit.

My parents are sick, my family member that Is like my second mother is sick,
I tried therapy but my therapist thinks I’m making things up in my mind and I make a big deal out of it all.

Basically spend 4 months trying to make her believe my issues come from the accutane, but she denies it still.

I didn’t listen to my body when I should have since I was running with the I’m a psychosomatic illness suffer diagnosis for a long time, which took my last bit of stability and made me end up with chronic pain.

It’s hard Right now for me.
My mental health is not doing well and suicide Keeps creeping up in my mind and leaves me dysfunctional.

I’am still torn…. I would like to but also would like to live life. But it is hard to see light at the end of the tunnel when everything starts falling apart and the outlook around me is not really much more sunny.

To everybody that is early in his/her journey.

Stop taking all supplements and stop all treatments for as long as possible.

It barely makes too much of a difference and is not worth the risk of suffering more.

If you take a supplement and you don’t feel right stop taking it and don’t retry. Your body tells you early.

Other than that it is important to socialize, do sports when you still can, and do everything as if all is normal. That worked fine for me for a long time and gives you less stress.

Don’t be too strict and life like a monk and focus on areas of your life that you have control over like career, dating ( there are woman that date people affected by different stuff), Hobbys and friends.

I still believe I could be at a much better place if I would have made less mistakes after ceasing the medication.

From my personal experience:
don’t take ice baths, i began to get prostate issues that I didn’t had before( there is studies linking it)

Go in the sun as much as possible.

Sleep well and as much as you can.

Be as active as possible during your wake time, occupation is a blessing for our situation and many other people that suffer a great deal.

If I had to give one statement that Would have had me at a better place:

Move on and live life, take care or yourself and your body, and be kind to yourself.

If you think things can not get worse, believe me they can.
Please try your best to not be stubborn and push yourself too much in trying to fix yourself and feel the way you did before.

BTW: thanks to you guys doing research and actually educating people.

Everybody that was around back than knows how it used to be and it is a massive step up.

I keep you in my prayers, and hope the community will become more positive.

I remember coming on Another Forum back than as a teenager and a guy in his 30 contacting me that he pities me that my life is over at such a young age.

Not to disregard his suffering but he was an selfish …. that wanted to pull others down with him, or make himself feel better about his situation.

That is why I hope this place will become more and more supportive, instead of making it worse for people with catastrophising.

The Nocebo effect is a real thing and we should especially care for those early in their syndrome and young.

As for me I don’t know if I’ll make it.
Life is falling apart, as is my health with this new disease of mine In sight and the health problems of many people close to me.
I pray for a better life, but the doctors, setbacks, injuries and pain left me burned out.

I’ll try to keep going and stay positive for now.
That was my story of 10 years in short form.
Best Wishes Lino

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
5 Likes

Funny how it is never considered malpractice when a doctor prescribes this for mild-moderate acne. Same here, I’m wrecked because of a treatment for what couldn’t have been considered worse than moderate acne.

The gaslighting from mental health professionals insinuating one is making this stuff up is salt in the wound.

I also didn’t put the pieces together for over ten years. Uncertain if it is better to not know.

6 Likes

I think it is to be honest, in most countries. At least now a days with the black box warning etc.

I’m not sure it’s implemented, but it’s clear from reading the guidelines that Accutane should not be prescribed easily. I don’t know what would happen if a patient were to report it though. The medical field is typically a sheltered workshop (same with the police etc) which means that they tend to stick up for each other. Or at least that’s the case in Sweden.

Also it seems from his story that he took the Accutane without the guidance of a doc. But I don’t know how the hell he even got his hands on 14 (!) months of use without getting it prescribed.

2 Likes

Hey I feel similar to you. I think knowing about the condition gives you mental issues that mix with the symptoms we experience in the first place. From there on it is really hard to differentiate between what is caused by the medication or our mental state and if they are somewhat connected.

I also wish that derms would have been more careful in prescribing it to milder cases and being more informative.

Still I think PFS, PAS is really rare. I know plenty of people that took accutane or finasteride or both and they didn’t develop the Syndrom.

Strangely my cousin got treated with accutane and seems to do just fine.

I know that there was speculations about the genetic predisposition before .

2 Likes

My bad for not being clear. I was under the guidance of a doctor.

She didn’t inform me about anything except dry lips and being tired though.

During the whole treatment she didn’t want to see me.

She said I have to finish a cumulative dose and when I reach that I can stop the medication.
If I stop early the treatment won’t be effective.

Looking back she didn’t understand accutane at all and just was a terrible doctor.

Im not trying to push the fault away from me though, I should have been more aware of the situation but I didn’t really understand anything at that time.

Unfortunately I didn’t had much guidance from my parents home so I just followed along.

Regarding the malpractice I think it is considered that as well.

Problem is i can’t prove that I even took the medication since she didn’t let my parents sign the form that is usually necessary.

Doctor visits been a mess so for when bringing accutane up.

Hope you are guys are doing okay and making the best out of the situation!

1 Like

I see, thanks for clearing up the misconception.

Agreed, she shouldn’t be a doc at all. Sadly this is the case with a lot of docs. Most of the time they just read a chart on what meds to prescribe for a specific symptom. It’s rare they truly understand the drugs (hell most medicines don’t even have a fully mapped pharmacology).

Don’t beat yourself up about it. You were very young and our society tend to project doctors as some kind of gods / know it all, when it’s far from the truth. Docs are just regular people who have read a lot of books on the human body. But the body is very much a mystery still in many aspects.

Many docs are also good and deserve respect, me personally tend to look up to skilled surgeons. It’s such a skillful craft, not like being a GP at all.

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:sweat_smile: Looking back I should have became cautious when I saw her Botox face.

But jokes aside I agree with you.
It is crazy how much trust we as a Society put in doctors when many don’t know how to deal with anything other than a cold or prescribe some meds, and complain they don’t earn enough money.

I also agree that surgeons are docs that are skilled.
Spent too long on researching illnesses and realized that doctors don’t know how to deal with chronic illness though.

Thanks for the uplifting words.
It’s hard not to though. But I think everybody effected knows that feeling.

Are you guys doing okay ?

2 Likes

There are/were the parents of some post-Accutane victims in the UK seeking to take legal action against their children’s dermatologists. They couldn’t find a prosecutor to take the case though. The indication to use the drug only in cases of severe acne is as flippantly ignored as speed limits. I think they can argue that it is standard practice to prescribe on a whim at this point.

@Lino2340 FYI: Derms receive no mandatory formal training specific to Accutane before being enabled to dispense the drug. You are probably absolutely correct that she didn’t understand Accutane at all beyond “it shrinks oil glands.”

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That explains a lot.
Must say that I think it really depends on the doc though. Some are more lucky than others.

A friend of mine had severe acne and got treated by a doc with a really low dose regimen.
His philosophy was the least amount of dose for the result we want.

He was really particular about any changes and kept a close patient, doctor relationship.

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I am doing much, much better since a couple of weeks after having a real slump (due to cialis that I didn’t react good to).

I’m gonna update my post in the near future about it.

I’m not surprised. Feel sorry for them but sadly it’s very hard to fight the medical industry.

They’re suppose to (in Europe IIRC) and only those who have had this training are supposed to be able to prescribe it. Also there need to be regular check ups etc.

Wouldn’t be surprised if it ain’t enforced that hard though…

This exact approach is actually stated in the guidelines for Accutane use. Guess that doc did his homework!

Maybe it was different 10 years ago though.

I‘am glad you are doing better mate.
I pray for the best.

Been there and done that.

I really do sign to what many here agreed to, that not Messing with our body anymore is the best course of action.

I think his therapy was 8 years ago.
His dad was good with the derm though, that certainly helps plus him being a decent folk.

I don’t know how many here feel. But I know that many rare disease communities mainly try to support each other and build good friendships on the way.

Don’t know if it makes sense but I think it would be great to build up a support network also for caring for new patients.

I will take a short break of the forum for now though since I’m not super stable at the moment.

I’ll be back when I’m better:)
Best wishes until than!

2 Likes

Hey everybody. I’m back for an update since last time I didn’t give any information about things that helped or made me crash in the past.

Things that improved mental symptoms, energy levels:
( mostly symptom management)

  • sleep
  • spending time with friends
  • being busy with life
  • cardio (running) —> slowly build up by walking over a long time period.
  • nicotine: gives me better concentration, small mood lifting effect.
  • marijuana: Libido, appetite, overall well being improves—> feeling worse afterwards though.
    ( don’t recommend)
  • occasionally sunlight gave me slightly oily skin on nose /forehead —> felt less anhedonia and more normal only when skin oil returned for a short time.
  • going to bed early.
    -wearing blue light protection glasses before bed.
  • the morning after drinking alcohol in the first few years after my crash gave me minimal libido boost.
    —> Vanished with time.
  • Cold shower.
  • vegan diet.
  • meeting new people, doing new stuff.
  • skipping on sleep for 1 night ( mood uplifting effect).
  • high fewer.
  • crying( few times after crying I felt some emotion resurfacing —> still trying to find a way to trigger this more often.

Things that made me crash:

  • soy milk.
  • physical activity.
  • Green tea.
  • vitamin d —> brain fog, muscle weakness, bad anhedonia.
  • milk thistle.
  • zinc.
  • vitamin c.
  • magnesium.
  • creatine.
  • ice baths —> linked to prostate issues in Studies.
  • keto and carnivore.
  • Quercetin.
  • Mental stress connected to health.
  • natural antidepressant: St. John’s wort, saffron.
  • anti histamines (tired, brain fog).
  • skipping on sleep ( several nights).
  • LSD.
  • all kind of probiotics.

Things I tried where I’m still unsure if they benefitted me or not:

  • Meditation.
  • Fish oil.
  • Fasting ( helped with stomach issues, made
    brain fog worse, crashed energy levels).
  • pain killers ( physically exhausted, mentally felling better—> emotional and physical pain stems from
    same Brain Region, so I think that could be the reason behind it).
  • gluten free diet ( didn’t make any difference)
  • CBT.
  • hypnosis treatment.

Other changes:

  • seasonal allergies vanished completely.
  • What I think is crazy is that the way I’am feeling now or after I crash is similar maybe identical to a feeling I had as a kid and teenager when I was eating a grapefruit.
  • I hated them as far as I can remember and only had bad experiences eating them.
    I wonder if other people on here maybe had the same experience and if the mechanism of a grapefruit could help us identify what happens in our body?
2 Likes

Thank you for sharing. It is the most important thing we can do.

The derms require regular checkups/bloodwork sometimes. Rarely hear of an Accutane patient being discharged or cut-off from the drug in the middle of treatment for not having bloodwork done. Often hear that a patient went through an entire course without knowing regular checkups and bloodwork are expected. This is coming from patient experiences posted in facebook groups. Never heard of a class, training program, special license, or certification required of derms that prescribe Accutane. Not anywhere in the world. Their professional associations like to play it off as if the simple fact of being a derm indicates a person has expert knowledge of the drug. It’s all a bunch of hogwash.

1 Like