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
[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
[ ] Reduced Ejaculate
[x] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[x] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x] 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
[x] Prostate pain
[x] Persistent Fatigue / Exhaustion
[y] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[x] 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
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Name of the therapy/substance:
- Dosage:
- How often you took it:
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Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
- Duration of use: Days [ ] Months [ ] Years [ ]
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Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
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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 [ ]
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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 [ ]
Looking back I should have became cautious when I saw her Botox face.