My acne ordeal and isotretinoin consequences

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#113

Self-reporting form

  1. Name of the therapy/substance: Ornidazole
  • Dosage: 500 mg
  • How often you took it: 2 times per day
  1. Status
  • Still using [ ]
  • Stopped with no lasting change to initial symptoms [X]
  • Stopped with persistent change to symptoms [ ]
  1. Duration of use: Days [X] Months [ ] Years [ ]
  2. Response when you started:
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [X]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. Current response (if you’re still using) OR Response in the time before you stopped the treatment
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [X]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [X]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
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#114

Well, it’s time to admit my attempt to recreate my improvement has failed.
During the last week of December-early January I was taking an antibiotic prescribed to me to treat blepharo-conjuctivitis. Surpisingly enough, I experienced some significant improvement in restoring my brain-genitals connection and having back some sexual feelings and arousal. Together with tadalafil course that helped me a lot and gave me hope for further improvement(at least I could function on a basic level at that time). Unfortunately, the effect didn’t last as it had been already observed in a number of similar cases and gradualy faded away to comlete loss of sexual feelings(erection quality stayed the same though).
A month later I tried to test if I could achieve the same effect again and started another brief course of the same drug from the same manufacturer bought in the same drugstore.
As a result no positive changes at all, just some mild case of dysbiosis.
Pretty much the same story with my previous attempt to re-create the recovery.
I still don’t think it was pure coincidence but kinda puzzled how it’s not working.

#115

It’s two years since the development of my PAS(well, most of the first year I was on Roaccutane). Despite of many fluctuations of my symptoms and some brief temporary recoveries my current condition is still resembling the one when I was taking increased dose of Roa. To certain extent I’m better mentally now, but considering the appearance of the obvious physical changes I’d say the overall situation got worse.

I’m losing my hope that I can get better with time as there’s no positive dynamics. The last time I felt sexual arousal in front of a girl was 2.5 months ago, the last time I had a proper erection was more than half a year ago. I remember how much excitement I had from just holding hands or kissing on a date and now I feel pretty much dead. The memories of how sweet the romance and sex used to be seem so distant. And it’s just 2 years. It’s hard to imagine 5 years like this or even more.

It feels like I’m constantly under some drugs, that make my feelings numb and my mind kinda foggy. It’s hard to maintain concentration for a long time and I’m sleepy throughout the day despite of my restored sleeping cycle. I simply get up not feeling rested enough. That’s really embarassing.
I decided to make a list of my current positive and negative changes.

Positive:

  • No more overwhelming anxiety. The level of anxiety I used to have was clearly unnaturally high. I believe the improvement came either from improving sleep cycle, or simply with time.
  • Less insomnia
  • I still can perform on a base level. It gives me hope that when I conquer my focus, I’ll be able to achieve my goals, albeit slower than I want.
  • No observable muscle wastage. Working out every day is yielding results. I have visible abs now and could be doing men’s underwear commercials :upside_down_face:, if not the goddamn acne.
  • My sexuality isn’t completely lost. Some time ago I started to lose all interest in girls and any sexual activity. It was so severe that got me scared. Fortunately, it stopped at some point.
  • Severe PE, I was suffering from at some stage, hasn’t returned.
  • My acne is slowly healing. Although the skin condition is still far from acceptable.
  • I still have overall young appearance, although my face tends to look exhausted and a bit swollen.

Negative:

  • Severe genital numbness is not going away or getting weaker. Almost no sexual pleasure, weak or non-existent orgasm.
  • Lack of normal erection. The tip is always more-or-less soft, no matter how hard the shaft is. Decrease in girth. Erection in the root is somehow weaker than in the shaft. Also, very often I just can’t feel it at all and have to literally look to see if I have erection or not.
  • Obvious penile curvature to the left, increased amount of wrinkled skin and veins
  • Disrupted brain-genitals connection. Somehow I still can get erection from erotic imagery, but it happens almost bypassing my consciousness and feels kinda random.
  • Some sort of prostate issues. Pain-like or discomfort sensations. Significantly reduced(almost zero) pre-ejaculate amount, and thick, jelly-like semen.
  • Extremely dry skin(especially hands and face) which is not healing at all. I used to have very soft and youthful hand skin(softer than many girls have). Now my hands look weird. They didn’t lose all youthfulness completely, but got covered in creases and cracks, feel tight and dried-out. Nothing has helped so far.
  • Acne all over my torso. Somehow my face is the least affected area, and most people don’t understand why I feel so defective. It’s exactly the same condition that made me try increased dose of isotretinoin. Only God knows how I regret about that stupid decision.
  • Weird feeling of tension in my head, usually accompanied by brain-fog. It’s getting in the way of various tasks that require my cognitive abilities. I don’t remember when I first noticed it, but seems to be quite recent.
  • Blunted emotions. Sometimes I experience flashes of extreme sadness when I feel like about to cry. Somehow I think it’s even a good sign I’m not completely numb.
  • I don’t feel sexual satisfaction. Despite all this shit I still have some sort of needs(more on psychological level) and they just won’t get satisfied. It’s just another factor to put on a strain on my already tired mind.

The treatments suggested by my derm and urologist appear to be ineffective.
I don’t want to put up with the situation as I can’t imagine living as a zombie-like being. I need to search for any sensible treatment options.

P.S.
The horrific news about the war left me utterly devastated. It took several days to return to more-or-less functioning state from apathy and obsessive doomscrolling. And still I feel completely lost. Not only because of the shocking nature of war and the fact that I have relatives in Ukraine. The moment I first heard the news, I immediately realized all my plans were completely ruined. My life, as I imagined it to be, won’t be the same and the current perspective seems pretty grim. Basically, I lost my job and have close to zero chance to find the job I desire now.
I can’t say I fully recovered from the previous blow, when I realized my PAS is to stay with me for an indefinite period and I might be doomed to not have a family or just a girlfriend. And now my future is destroyed and there’re many tough challenges ahead.

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#116

Hey man, it’s really sad to hear all that. I really understand every problem you are dealing with right now. I hope your relatives don’t get hurt and this pointless war will be ended soon. In this short life, we have to deal with PAS and another problems of life. It was already hard enough but now we have to be stronger than ever. I hope you find a good job with flexible working system which won’t push you too hard. I really get you about brain fog and how hard to focus or trying to work on something under this condition. I will get a job really soon it’s certain but i don’t know how i will perform with this insane brain fog and other side effects just like yours.

I started using panax ginseng two days ago, that helped me really well almost a year ago but i am not sure if it’s going to work the way it used to be. At that point every little thing which makes us feel any little better are welcome to me. My decreased libido and desire to almost anything besides libido is too unstable nowadays. Last week i somehow felt much better. I even went to sprint and worked out harder and my libido was even better. But this week i feel completely lost. Brain fog got worse. This is insane. I live with my family and they can observe me directly. When they see me like this i can feel their sadness too. I am sick of trying to hide what i have been through but there is nothing else i can do now.

To me; the main struggle is understanding if am i (or are we) getting better or worse? I remember i was much more better last year and all of my sides were about sexuality. And i am afraid to ask if everything goes worse, what will happen after a year or more? Anyways, let’s not lose hope and keep moving. I hope you and your family good luck my friend. I will keep you updated about ginseng.

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#117

I don’t know why I’ve never mentioned tinnitus among the other side effects. At least since I started to feel this weird tension in my head, tinnitus(closer to some low humming sound) is always on. Although I don’t usually notice it throughout the daily activities. Feeling the pressure in the head seems to be not connected with the blood pressure surges, as it was normal when I checked.

#118

This weird feeling in my head has intensified. It’s especially strong when I try to process any more-or-less sophisticated information, like reading a non-fiction book or following some tutorial. It’s very unusual for me. I usually don’t even have headaches or smth like that. Even after sleepless nights.
And now I’m overwhelmed with some kind of mental fatigue. My head feels so damn heavy, yet I’m not actually tired. My brain is like slowly imploding. Perhaps, it’s a sign of mental exhaustion of the recent days. Or my condition is deteriorating, Idk. I guess, I need some rest to see if my state’ll improve.

I’ve made another attempt to get a proper penile doppler today. I went to the head of an urology department in a hospital(by a recommendation). And this guy appeared to be a total prick. He didn’t even have a look at my blood panel, declared all my complaints nonsense and told me to see a psychotherapist in quite a rude way. I’ve wasted half a day and find this absolutely inappropriate.
Something is clearly wrong with my body and I still have no idea how damaged could be my tissues.
Fortunately, my urologist belives me and we’re looking for a solution. And despite he’s been unable to help me so far, nonetheless he gives me the impression of a very respectable person.

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#119

It’s time for another update. Considering what’s going on around me now, all my personal problems don’t seem so significant anymore. But as it might be interesting for some people, I decided to write about my last observations and improvements.
First of all, I’ve finally made a proper ultrasound examination(with Caverject) and discussed it with two doctors. They confirmed there were no signs of structural changes. The blood vessels are in a good condition, no venous leak. I was told my soft tip problem was connected with the lack of arousal. That’s what I thought. My urologist suggested to try negative pressure therapy. I haven’t decided yet if I should really do it.

Now the key points:

  • This tinnitus thing keeps haunting me. I suspect it could be side effect of my extensive use of tadalafil. Although it appeared more than two months later after i started taking it. Andd some short breaks(2-3 days) don’t change anything. It’s always on since waking up. At least the brain fog/head tension has somewhat decreased, I feel a bit better.
  • I’ve tried vitamin F cream prescribed by my dermatologist. It did wonders on my horribly dry skin. It still feels kinda dry. But my hands have a healthy look now. No more fissures and peeling between the fingers. I do hope this effect’s gonna stay.
  • My acne is healing slowly. It frustrates me a lot. My derm says my skin is recovering very slowly. Together with a few other oddities I attribute it to the isotretinoin consequences.
  • For the most part, my sexual sides are still present. It’s been more than 3 months since I really felt a glimpse of sexual arousal. Despite of having erections I still don’t feel anything and don’t get excited.

I’ve recently noticed some improvement in sensitivity and some increase in libido. Erection quality also seems a bit better. The soft tip is slightly better, but still not 100% normal. I’m a bit puzzled what could lead to this improvement as my emotional state is currently much, much worse. I consider it as another evidence that these symptoms are far from being purely psychologic.

  • Anxiety and depressive symptoms have returned. Also some minor sleeping issues. It was obviously triggered by the recent tragic events and the overwhelming feeling of helplessness. I haven’t felt that low in ages. Keeping it together isn’t easy as I don’t see any hope in the future.

I keep taking Tadalafil, Omega-3, Centrum multivitamins, and probiotics. I’ll post an update after finishing the course.

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#120

Do you have a link? Amazing they even admitted to ED as a possible side-effect. It’s no big deal like rhabdo, joint pain, and hyperstoses from Accutane aren’t a big deal to them.

#121

Sure, this is the article:

Some of the sides are marked as possibly permanent.

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#122

One of the symptoms that led me here when I first developed PFS, was acne like I had never experienced in my life.

On my face and shoulders mainly, the acne was deep fluid filled pustules. They flared up in the same spots repeatedly, until I was sure scarring was inevitable.

After nearly a year, the acne subsided and has not returned, with no discernable scarring.

I know I’m not providing any answers, but just relating my story for potential benefit of others. Jim

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#123

Reflex hyperandrogenicity possibly?

Increased shedding after stopping Propecia has been attributed to this rebound effect.

Accutane never had a profound effect while I was on it. Sebum was coming out of my pores like some sort of deranged pasta press for a few days immediately prior to my post-drug crash. It’s common for people taking Accutane to experience a “flare” or “purge” phase before it starts working its sinister magic, but they don’t usually end up like us.

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#124

I have significantly higher than normal level of 3 alpha-Androstanediol glucuronide (which is said to be a marker of androgen activity in the skin). I’m pretty sure this is directly connected with my acne. Other than that I don’t have hyperandrogenicity symptoms. Most importantly, my libido is still very low.

#125

Considering my sexual sides, I see some improvement but I find it very disturbing that it’s already 4 months since I felt anything close to more-or-less normal sexual arousal. It happened to me in autumn and in December when I was struggling with a bunch of ED symptoms. Now most of them are gone, and I could technicaly have a sex life but I don’t feel anything. It just doesn’t happen to me at all.

#126

That’s surprising. My levels of 5ar and 3a-HSD/HOR metabolites in urine were consistent with what’s typically seen in patients actively taking Accutane 12 years after I quit the drug. Also, borderline low 3a-adiol-g in my blood. I had moderate acne with some cysts at the time it was tested.

There were also a few other PAS patients on the old “All Things Male” forum who posted 3a-adiol-g results. It was something like 3 of us were low, 2 of us were normal, and one guy with above range levels claimed to have the worse sexual symptoms among us. No clue what their acne was like when they had it tested and the forum no longer exists.

Just saying it seems there is little correlation between hormone levels, symptoms, and androgenic phenotype for us.

#127

How are you doing now?
At the same time I seem to have low progesterone. Other people with PAS observe the opposite. I’m cofused with this difference while there’s an obvious similar pattern of the symptoms.
I’ve recently had some period when I felt just like on Accutane again, with the same skin dryness (but also with acne). But my overall impression is that I’ve reached some kind of baseline and now my condition is fluctuating around it.

#128

Not doing well right now. Can probably be attributed to getting old, in addition to the consequences of 22 years with PAS.
I know what you mean about having a general set-point, around which the symptoms oscillate. I guess that’s most aspects of health for most people, but our zero amplitude is much lower post-drug. Looking at it optimistically, at least you can say you’re stable now.

#129

I’m sorry to hear that. I also couldn’t figure out what should be attributed directly to PAS and what to ageing. I can only imagine how hard it must be to endure such long period of PAS. I’m struggling with acne for more than a decade and I already feel exhausted. The development of PAS has just worsened it for me, made me close to desperate.

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#130

I’m currently experiencing a huge setback. It’s hard to identify a single reason. I did hope I reached some sort of “baseline” that could allow me to live more-or-less normal life. Yep, without former passion, energy or joy, but still close to an average life. It seemed that I only need to make some tweaks. But I was wrong.
It appeared that I could lose even that humble progress I reached.
The only positive change is that the annoying head pressure has significantly decreased after I stopped taking tadalafil regularly. But my nocturnal/morning erections disappeared as well and it’s already two weeks since I had anything like that.
Insomnia has returned too. And although it’s not as bad as it used to be, I still wake up not feeling refreshed or rested. Of course, it comes together with anxiety and heavy thoughts that haunt me before sleep.
My skin condition leaves much to be desired. Although acne is moderate, its ubiquity just kills me. And how slowly my skin heals and how fast it could get worse makes me think I can never reach acceptable improvement.
My recent blood test showed my Testosteron level dropped twice, almost reaching the low normal limit. I haven’t observed it before, even when I was on Roaccutane. My T-level was surprisingly stable during my PAS. Well, untill now.

I don’t know what triggered the setback
It could be treatment with azelaic acid (I was unaware of its 5ari properties).
Or this whole feeling of improved baseline was a mere illusion and my ED was only mitigated by tadalafil without any actual improvement.
Or I just underestimated the level of stress I’m dealing with and it’s really affecting me.

#131

Hey,
I’m really sorry to hear about your current state. If the worsening is coming from the acid perhaps it reverses naturally, are there other people who used it who have experience with it?
I also deal with feeling bad a lot like extra stress bc of the antipsychotic I’m taking. What bad luck that the testosterone dropped :c.
I really hope that the mife I’m waiting for will cure me like it cured Ronnie and you can use it too.

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#132

Well, it’s time for another update.

Compared to month ago, my condition has definitely improved, but only to the level of my PAS baseline. Sometimes I feel like I’ve almost returned to my mormal self, but the reality proves me wrong. My experience with feeling excitement reminds me of an engine that is producing the buzz but just won’t start. And although I’m far from complete impotence, I still feel sexually impaired, and it brings my frustration on another level(which is already pretty bad due to other issues and the current geopolitical situation).

Besides, I have to state that none of the treatments suggested by my derm has helped me. It’s another half a year and there’s no improvement in overall condition. No topical treatment has any significant effect. The feeling of defectiveness and inferiority, that once seemed to be consigned to the past, has made a comeback. Looking at the happy couples I feel like I just don’t belong to the normal life. From time to time I’m tempted to try Accutane again, as I haven’t found anything useful except that damned drug.

Oddly enough, the majority of my positive changes are connected with my mental state. I’ll list them to be clear.

  • First of all, I’ve noticed some apparent improvement in my memory(especially, the short term one) and focus. My mind feels sharper and clearer now. Unfortunately the effect is somewhat spoiled due to anxiety and frustration.

  • Sleep quality has significantly improved. I still have some issues with falling asleep, but I feel way better in the morning now. I think the method suggested by Dr Huberman has proved its efficiency for me once again. I wish it could work faster though.

  • My visual libido has returned. I’d even say that my libido has grown stronger in general, but I don’t feel it in my body, only in my head. From time to time I experience the flashes of that exciting feeling in the chest, but every single time it is fading away, not developing into that strong sexual excitement I used to have.

  • Morning wood has returned. But at the same time some ED issues (like the “rubberness” and so on) has returned as well. So, I must admit tadalafil didn’t provide permanent improvement. But I still avoid taking it daily because of its possible connection with the tinnitus(yep, it’s still there).

  • The skin dryness has not returned. I was afraid I would have those dead-looking hands again once I stopped using the vitamin F cream daily. Luckily, it didn’t happen.

  • My hair loss rate is still very moderate. Nothing like that terrible post-accutane shedding.

  • Looks like my body isn’t deteriorating faster. I had an impression that my ageing intensified while I was on the higher dose of Accutane. I guess, that stopped after discontinuation of the drug.The apparent collagen loss and loose skin is still bugging me. But at the same time I still have quite youthful look and regular working out has obvious positive effect on my body. I wish it wouldn’t be spoiled with acne though.

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