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Isotretinoin/Roacutane have you or a family member been on it?

(26 Posts)
Troton Thu 09-Aug-18 12:40:57

I’ve been on Isotretinoin before and planning to go on again for acne. It’s helped me with manageable side effects.
I’ve got two sons and I can’t help but worry (constantly!) they will inherit my bad acne and also end up on Roacutane. It seems to me that people that have scary side effects (depression etc) seems so be most common in men. I’ve also read about permenant erectile dysfunction in men after taking Roacutane.
Does anyone have any experience or family members or friends who have been on it, particularly male, how did they find it?

Roseformeplease Thu 09-Aug-18 12:45:21

DS (now 18) was on it when he was 14/15 and it was transformative. Really, really incredible. He went from huge red pus filled spots all over his face, neck and back to having baby smooth skin. It took 2 rounds. His skin is a bit more occasionally spotty more recently.

The key for us, with a boy, was getting it sorted before he needed to start shaving as that is when DH ended up with scars and the pock marks of the worst spots.

No issues long term at all and he was very closely monitored with blood tests etc frequently to check on his liver function.

BunnyCarr Thu 09-Aug-18 12:46:13

I used roaccutane.
It was brilliant, cleared up my skin and I never looked better.
Thinking of using it again, as I feel my skin has become quite greasy again.
I took roaccutane 11 years ago for about 5 months.

Roseformeplease Thu 09-Aug-18 12:46:27

No idea about erectile dysfunction but he has had one or two relationships (short lived) and is, I know, sexually active.

Lynne1Cat Thu 09-Aug-18 12:53:22

I have Rosacea, and when it was at its absolute worst, I was prescribed Roaccutane and it worked like a miracle! I was already on antidepressants a long time before all that and having this drug didn't make it worse - in fact, because my skin became so very much better, I was happier. I had 4 courses of Roaccutane, over 3 years. The only side effects I ever had were dry eyes and mouth.

RomanyRoots Thu 09-Aug-18 12:55:22

My dh took it for acne and was on the verge of suicide, one of the side effects.
it's not a drug to take if you have any alternative.

Troton Thu 09-Aug-18 14:43:42

Thank you. I also found my mental health improved dramatically whilst on it as I was so down about the state of my skin beforehand and feeling confident about my face for the first time in years was amazing. But despite it helping me so much I’m still so reluctant to put my sons on it due to the things I’ve heard (severe depression as above etc)
I suppose what im trying to do is hear from as many people as possible who’ve used it and establish whether on balance it’s been worth it for most people.
Thank you all for your replies

littlepooch Thu 09-Aug-18 14:49:35

I had 2 courses as a teen and it changed my life. I went from having terrible skin to having clear blemish free soft skin. It was amazing and at 38 years of age my skin still looks really good. Mental health wise i was fine, i did suffer from very dry skin and dry eyes.

The only time i questioned it was when i was struggling to conceive, i read some people felt there was a link between fertility and having taken it. But to be honest when you are in the depths of depair over ttc you will clutch at anything! And looking back i dont think there was any scientific link, just lots of chatter on a forum - with a clear mind i doubt there is a link. My sister took it twice and conceived both her kids first try! Xx

Gormless Thu 09-Aug-18 14:57:47

I am female and took one round of roaccutane aged 23, 20 years ago. I remember it being difficult to take because it made my lips so dry, and I suspect it made me rather sensitive to the sun as well. But it worked wonders on my severe acne which disappeared and never returned aside from the odd spot once in a blue moon. It didn’t affect my moods either. So that was my experience.

ChocChunk Thu 09-Aug-18 15:01:09

My DD took it recently after suffering with acne from age 12 (she’s 22). Totally transformed her skin although she did hugely suffer with dryness (lips, skin elsewhere).

Clarabel22 Thu 09-Aug-18 21:37:23

I took it at the age of 37 for 4 months. The first month resulted in a handful of humungous boils which was excruciatingly embarrassing. After that all skin and hair was bone dry. Most disturbing was 2 weeks before the end of the course I started experiencing sudden waves of self-loathing. I had been warned about potential depression but I did not recognise these feelings as a side effect and they were so powerful they took over my rational thoughts. I only saw it for what it was in hindsight. This went away a couple of weeks later when I finished the course.
However, since then (10 years ago) I have permanently cracked lips and have developed extreme sensitivity to anything with perfume in it. Cannot wear make up or use flavoured toothpaste. Acne returned 5 years later.
After my experience I would absolutely not allow my children to take it. I have achieved best control of my acne by gentle cleansing based on the principle of maintaining the acid mantle /ph - the opposite of my previous approach.

9amTrain Fri 10-Aug-18 10:26:06

I'm a male who took it.

Cleared my acne up completely within 2-3 months but I think I was on too short a course as it came back a year later. The only obvious directly linked side effect was dry lips.

However I'm hesitant to go back on it for a multitude of reasons, and my face is fucked from scars because they refused to prescribe it for a few years despite having cystic acne. It was because depression was on my records but the acne was a big cause of it.

So my acne came back as well as leaving it too late to avoid (too many) scars.

Great!

Momo27 Fri 10-Aug-18 11:24:55

My nephew took it aged 16/17. My sister (his mum) was wary because of the possible side effects but having seen the life changing results she’s really happy with his decision to take it .

From what she’s told me, it’s a last-resort drug when other treatment hasn’t worked, and is for severe cases of acne where it’s having a negative impact on well being. My nephew was closely monitored while on it, regular blood tests etc He had itching and dry lips but these side effects were manageable and disappeared when he finished the treatment

Have to say the results are very impressive. He had severe acne and felt very down about how it looked, particularly on his face though he also had bad acne on his shoulders and back. Not only how it looked but also the pain; my sister said his face would literally ache sometimes with the really nasty cysts.

This was all several years ago and ime roaccutane really is a wonder drug if you’re unlucky enough to suffer with very bad acne. It has never returned and my nephew is so much happier about his appearance. His skin is really clear now apart from the very occasional spot which most people get from time to time anyway

LapdanceShoeshine Fri 10-Aug-18 11:46:31

DD2 took it 4 years ago - she’d had lovely skin in her teens but developed cystic acne in her late 20s & got really down about it. She used to plaster her face in foundation to try to cover up.

I can’t remember all the details about side-effects though she def had very dry lips & also inside her nose.

It worked wonders anyway & she luckily had no issues with depression. She still has a few scars & gets the occasional spot but she’s very happy with her skin now smile

StUmbrageinSkelt Fri 10-Aug-18 11:50:41

DS took it after being referred to a dermatologist by his psychiatrist. The dermo didn't bother to warn him about any of the psychological side effects and he became extremely unwell mentally.

It was very scary. His skin did improve though.

Troton Fri 10-Aug-18 20:22:02

Gosh such a mixed bag of responses. It really does seem to be a love or hate drug.
I guess the positive is that by fully researching it beforehand I’ll be well aware of potential side effects and what to look out for, especially those linked to depression. I’m still convinced it seems to have a worse effect on men than women overall in terms of mental health

userofthiswebsite Fri 10-Aug-18 20:28:14

I'm waiting to go on it now. Used Lymecycline for 6 months which works great but the effects stop with me one week after the course ends.

Have tried using it twice now and it recurred both times so Roaccuatne is the next stop.

I don't really suffer from 'normal' spots but get horrid cystic lumps deep in the skin in the chin area. Right now I have 2 of the buggers.

jalopy Fri 10-Aug-18 21:13:35

My ds had roaccutane when he was 19 due to severe cystic acne on his face.

Fortunately, he had no mental health problems on it. Very dry lips and several nose bleeds.

It transformed his skin too.

Judydreamsofhorses Sat 11-Aug-18 01:02:50

I was prescribed Roaccutane by a dermatologist after trying every antibiotic going, but actually opted not to take it because I was so concerned about side effects. I was worried about mental health (suffer from depression anyway), and also, vainly, not being able to wear my contact lenses. My skin resolved itself other than occasional period spots, and I am now completely unmedicated, but at its worst I had such severe cystic acne on my chin and jawline that random strangers used to comment on it. (That was nice!)

sandgrown Sat 11-Aug-18 08:13:11

My son took Roaccutane about 23 years ago . He was already very down due to his bad acne and no other treatments had worked. It was like a miracle. The spots disappeared and have never returned.
His confidence soared! He did suffer dry skin and lips at the time. He has a child so no effect on fertility.

Tawdrylocalbrouhaha Sat 11-Aug-18 08:21:00

I took it after about 10 years of hideous acne and NOTHING else working whatsoever. Roaccutane sorted my skin out in 3 months - I wish so much that I had tried it sooner. The first few weeks of painful boils weren't great, and the dryness was a bugger, but I didn't care because at least I could tell it was doing something.

Acne in itself causes stress, depression and both those things are associated with reduced sexual function, so I think you have to take that into account when weighing up the pros and cons.

Troton Sat 11-Aug-18 21:01:52

Thank you so much for taking the time to let me know your (or your relatives experiences). I really appreciate getting a balanced view from a range of different people on it.
Also (selfishly) it helps me to know I’m not the only one out there suffering as it gets me down terribly and my self confidence is so incredibly low :-(

Mari50 Mon 13-Aug-18 10:06:37

I've taken it for cystic acne and it was great, the side effects were relatively mild, dry lips/eyes/nose bleeds but all fairly minor.
Through the course of my work I have met two men who developed optic neuritis and now have significantly impaired vision as a result of taking roaccutrne though so while its a wonder drug for many some people do have to deal with very significant life changing side effects.

Troton Mon 13-Aug-18 14:16:58

Gosh that’s worrying
Do you know what dose they took?
When I took it two years ago despite it being amazing for acne I realised at the end of my course that my eyesight wasn’t as sharp as it used to be and I now needed glasses. I visited three opticians in the end and they all said it was coincidence and that the dry eye effect of Roacutane probably is what made me notice it more but that I’d of needed glasses anyway.
It’s the one thing that does make me think twice about going back on it

Mari50 Mon 13-Aug-18 16:42:53

As far as I know they took the appropriate dose for their weight.
This wasn’t a need for a prescription so I wouldn’t worry that roaccutane caused that, both these lads have lost a significant level of vision and of peripheral vision.
And yes, it is quite unsettling.
I’m not sure I’d have gone ahead had I met them prior to taking roaccutane myself. It does remind you that every side effect listed has been experienced by someone. Thankfully the significant ones are rare.
And acne can be incredibly debilitating. Granted most people think of it as cosmetic but when I was at my worst I think psychologically I was in despair.

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