An Accutane Story [Isotretinoin] (Long post w/images)

isotretinoin
accutane

#21

I was in personal contact outside of the forums and as much as I hope that is the case I know his condition had worsened ): let’s hope for the best.

Yeah, true. I don’t think it’s going to be that useful without a before/after timeline re pics. Maybe I should have been more lascivious before i took finasteride so i had some kind of snapchat history to fallback on. Nevertheless, we have other irons in the fire, and whether someone goes ‘oh yes that is worse’ or not, it’s not going to do those suffering any favours or get a label change to protect others.


#22

I just don’t see how they can deny such drastic physical changes with some people, that’s a sign of a poor doctor. I’m sure there are a few good doctors out there who genuinely want to help us. It’s just finding them which is the problem.


#23

Sorry to hear your story chief. It is similar to so many others out there. Reading your story is like a carbon copy for my own. You really nail the psych effects especially.

The thing I think is that you are not willing to accept what has happened to you. And that is a fucking brilliant thing. It’s the first step back out of this mess.

I replied to you on another thread – but do you have time to boost this site? Could you spend a smidge of time asking people to register? Maybe over on Reddit or acne.org, or others.

It’d be a big, big help.

How does it sound?


#24

Hopefully the guys see my post on the acne.org thread now, it’s such a mess because everything gets burried over there.


#25

Well unfortunately I got back from the doctor and he didn’t even look at my skin, he thinks my symthoms could be related to my mental health, so they’re sending me back to a psychiatrist probably to be put on numerous SSRI’s which initially caused my PSSD. They want to rule out any other causes before they go down any other route. They’re probably just having a laugh at my expense describing all these weird side effects from a drug they think is harmless. This is exactly the issue, didn’t even seem to care my penis is numb and my eyes are ruined, just said he’ll refer me to stuff after i go to the psychologist. I’m going to refuse everything they offer, but will they force me to take it? Let’s hope not, they where very pushy previously, he tried to tell me another antidepressants would fix my PSSD etc.


#26

Hang in there. I Dm’d you.


#27

I’m sorry about how your doctor’s appointment went @Devolution. I suppose that it suggests where he may think where the problem lies or as you say wants to rule this out, but it can feel so much more of an uphill struggle when they think that it’s purely psychological, and the problem with being referred to any specialist is that they will view you through their speciality. I had this problem with a psychologist I was referred to which only made me feel worse. All you can do is stay strong and stick to the facts. There are unfortunately many guys here who have similar experiences with doctors.


#28

If they think its mental health there is no point going back to your Doctor.

When I went to my local GP clinic about PFS they were worse than useless and tried to blame all my physical problems on “depression” which I didn’t even have at the time.

If your looking for a Doctor that may be able to help you I’d recommend going to see Dr Edmond O’ Flaherty in Dublin. He deals with PFS patients and is one of the few Doctors who will actually listen to the patient.

Hes not like most Doctors who think they know it all.


#29

Thank you so much Mark i wasn’t aware anyone in Ireland knew about this condition, would it be possible for you to send me his details as I have no idea how to contact him, have you seen him yourself? I know im an accutaner but i think the same advice applies, i really just need to stop my skin decaying because right now i genuinely feel im going to die or be in a state not livable, the doctors appointment today made me extremely upset today and now some of my family thinks it’s mental too, that somehow im making myself worse, as if seeing my body decay isn’t traumatic enough. It’s like telling a cancer patient to cheer up because being upset is causing your body to damage itself.


#30

Thank you Scotsman, I won’t budge from what i know is true, I’m hoping if i go and show them my actual skin they’ll believe me, but due to past mental health, they’ll probably say oh you always had that… Or say it’s from aging… Yeah, sigh…


#31

So sorry to read your story Devolution, just wanted to thank you for having the courage to put it out there. I share so many of your symptoms despite taking a different drug. It’s uncanny really.


#32

Here is Dr Edmond O’Flaherty’s contact details.

Yeah I saw O’Flaherty myself hes a great Doctor.

http://www.gleneagleclinic.com/doctor-edmond-oflaherty.html

Dr Andrew Rynne also deals with PFS patients but he is now retired from general practice.


#34

I know exactly how you feel Devolution. I also can laugh uproariously on occasion. But still dead inside. And also get dizzy and ill from minor physical exertion.

I’m so sorry your family aren’t supporting you as they should. I know what’s it like to have the doctor’s think you’re mad though. It’s crazy to me that this condition still isn’t officially recognised.


#35

This is so typical. It’s a shame, but be prepared for most of the people close to you to be in disbelief. Certainly you have shown them every bit of documentation available describing PFS and reports of depression and sexual dysfunction as side effects of Accutane. I think that is about all you can do. Not sure how the physical changes go ignored, but if you fall anywhere within what someone considers normal for a physical trait, they will ignore the change.

One of my very good friends went through chemo, and I think a bone marrow transplant, in his early 20s and talked about losing his libido, strength, and energy, and even mentioned problems with ED and severe depression. He said everything gradually recovered soon after the treatments were stopped and the cancer was put into remission. Thought he would be one of the few people to understand when I told him about my problems to explain why I was without a regular girlfriend for most of my life and regularly turned-down opportunities for hookups. Also tried to describe how this condition effects me mentally to explain why I am often distant and with a blank expression on my face.
…He told me that I only had these problems because I believed I had these problems. One of the most insulting things I have ever heard come from someone’s mouth and I felt an intense urge to smack him across the face at that moment and it could have turned ugly if it wasn’t a phone conversation.

It will be best if you try not to let it get to you too much.
Don’t expect anyone to understand except for those who are also dealing with PFS/PAS/PSSD.

I’m glad to hear you have found support here and we all are glad to have your support as well.


#36

Haven’t told my best friend, he wont understand. That’s shocking from your friend there.


#37

I know how you feel. I thought I had EDS before I learnt about PFS.

I got PFS symtpoms after taking antibiotics (keflex)

I also have thin skin/muscle wastage. Sucks balls…

Have you made any progress?


#38

Hey Jupiter, no unfortunately I haven’t seen any improvement yet, it’s still worsening 11 month’s later so I’m hoping it’ll eventually balance out, once it does I can then try tackle the issue.

How long have you been off the medication now? Did your condition start on the drug and get worse after?


#39

Slightly better news guys, so today i found myself at rock bottom seeing what accutane has done to my body, i was getting extreamly upset seeing pictures of me a few months back and genuinly can’t look at my own body these day’s in disgust of what i am now, eventually I had to tell my aunty what i believe is wrong with me and said a lot of information in a short amount of time, androgen over expression etc, but her being the amazing person she is, understood me completely and made me book an appointment with Dr. Edmond O’Flaherty right away , a user called Mark2012 recommended i go see him and he told me i can call up to his clinic straight away.

Dr. Edmond was the first doctor who listened to everything I had to say, he’s never heard of a case with accutane that was as bad as this and has seen many people with accutane related symthoms recover or improve, he’s also dealt with finasteride patients too and i asked would it be possible to get a skin biopsy for my skin to see if there’s anything that can be detected, im very interested to see if i have damage to my small fibers with all the numbing and burning, the same with seeing an optamolgist, getting bloods, endocrinologist etc. He wants me to email my symthoms and what research that could be useful, he wants to look into this himself and seemed very interested in my case.

If i can at least find something wrong within the skin, that could be useful for everyone here in a similar situation with the skin and I’ll try my best and see what he says once i email him, i also asked about a low dose of naltrexone which he prescribes off label and he said he’ll get back to me on that, it’s great to see some doctors actual listen, i wouldn’t of found him if it wasn’t for me posting on this forum, thanks everyone for all the knowledge you’ve given to me and i will try see if i can find anything wrong with myself that’s detectible, if not at least I’ll give it a good shot. I definitely think it’s androgen related with everything people have shown me, but maybe there’s even more to it? Who knows.

Would you guys recommend i send him Awors 5AR withdrawal syndrome as it theories accutane as well? Or is there something more modern i could send him to give him a lead? I’ll definitely send the study Dubya linked in regards to skin related changes due to an androgen mutation.


#40

This is great Devol! I tried to msg you on skype , hit me up when you have time.


#41

I met with an old friend today, we haven’t talked in about 8 months so I invited him over for a few drinks tonight. I knew he’d been on accutane himself but didn’t want to mention my side effects as they’re very negative so I just said did you notice anything while on it yourself?
What he told me completely shocked me, he said this.

“Yeah I noticed some extremely weird stuff, my legs
went numb for a few weeks along with my cock, i couldn’t feel it properly, my emotions also went numb, my nan died and I couldn’t feel a thing.”

I then showed him my stretchy skin and he said oh yeah it did that to me too and he pulled his skin away like I can do, his hair also thinned slightly like mine as well. I’m completely shocked that a guy up the road from me, a friend has almost identical symthoms, he’s very lucky, his penis is returning to normal unlike mine but at least the past few days I’ve come to terms with myself enough to appreciate myself a little more for who I am. Maybe this syndrome is a lot more common than we think? What’s the odds of that guys, im still shocked.

I will add I can get an erection to porn and I got horny a little today, even if the penis is a bit dodgey looking and lumpy and thin skinned, not that horny though and my skin and penis still burn, very sore at times but I don’t feel as bad even though these things are effecting my life, I know @Scotsman tries not to think of what makes him sad and i completely understand that now, I disabled my Facebook and cleared 1 years of pictures from my phone, I’m trying to start fresh and forget the past as seeing myself just upsets me, I hope one day I can be who i always wanted to me, a nice and caring guy not plagued by PFS, OCD and other mental health issues, things where hard before, PFS so im used to that, but i just thought I’d share as of now regardless if i get better or worse, in this moment i feel a little better about the future.

*Edit - in regards to numbness/loss of sensation of other parts of the body, skin, smell, hearing etc, what would be the effect of AR on that? Just curious how it’d cause loss or reduced input to body wide area’s.