Accutane and sexual side effects

[BeckyMa]

Hi all, my 17yo has been taking Accutane (isotretinoin) for his acne for about 6 weeks. He told me yesterday that he is having worrying side effects: dry ejaculation and a lack of feeling during orgasm. It was obviously difficult for him to tell me this.
After some Googling it seems there are a lot of anecdotal reports of young men and women having difficulties with sexual function on this medication. Some say it is permanent and life destroying. Obviously I'm beside myself and hope to speak to the dermatologist later today for advice.
There seems to be little known about this... there is a government expert working group who have not yet reported. I wondered if anyone has experience of this... would especially love to hear from people who have experience of this side effect going away once the medication has stopped! I think it's very likely that my son will stop taking this ...

It does dry everything out that used to be wet, it stops when you stop taking it though.

I was too knackered on accutane to even contemplate sex.

Hi,
it would seem feasible as everything gets very dry, lips to the point of cracking, eyeballs needing daily drops and lots of skin moisturiser etc.
He might only need to be on it for a few months and I'm sure he will return to normal once he stops. Just need to weigh up the pros and cons.
I'm really glad it worked for me but I stopped after 6 months due to starting to lose my hair! Good luck x

Thanks for the thoughts. It's a tough call... a very effective medication, but unpleasant to take and lots of rumours surrounding it. I spoke to the pharmacist at the hospital this morning and she advised that my son stop taking it while they investigate what little is known about it in the medical journals. Even then I won't know what to think... if they are relying on teenagers to volunteer info about how they feel when they masturbate then the evidence base is going to be pretty sparse!

Good grief I can’t believe she advised someone to stop taking a drug prescribed by a consultant. She’s going to have a very cross dr on the phone. She must be crazy.

TBH I'm relieved. There isn't much known, but the anecdotal evidence is a bit scary:

www.gov.uk/drug-safety-update/isotretinoin-roaccutane-rare-reports-of-erectile-dysfunction-and-decreased-libido

www.ncbi.nlm.nih.gov/pmc/articles/PMC6004900/

www.acneeinstein.com/does-isotretinoin-cause-impotence/

Sounds like you don’t want him on it at all. I was on it four months and probably going on it again this year but I know all side effects will stop within days of coming off it.

She’s going to get into trouble if you tell the consultant that though.

It's not my decision whether he takes it or not so really what I want is besides the point. He's scared about what he has read about men permanently losing their sexual function, and asked me to speak to the pharmacist who is managing his treatment partly because it is so awkward for him. The issue is that this side effect is so poorly understood, partly because people are embarrassed to report it. The only cases that I can find are extreme cases where people are still impotent years, even decades, after stopping taking it. But you'd expect that... less dramatic cases where men might temporarily lose their ability to ejaculate or have an erection are less likely to find their way onto the forums on the internet. That is why I posted, to see if there is any reassurance out there. Does anyone know of boys who have lost their ability to ejaculate and then regained it once they've taken the drug. He's just afraid he could lose that for ever... for a 17 year old that is scary.

I don't think the pharmacist will get into trouble. I think she is quite senior. She said there was a similar case last year with someone on isotretinoin who had IBS, similarly they stopped treatment and asked the research team in the hospital to do a literature search to inform the decision making process about next steps.

She's brave I'll give her that.

encourage him report this side effect to the yellow card scheme.

but pp is probably right. the medcation is very potent and dries up all skin, which can be especially unpleasant on mucous membranes.

Yes we are going to do that. There is already a government working group looking at it the yellow card reports that have come in so far.

He's on a very high dose. It was 50mg a day for the first month and then 100mg for the second. It was very soon after the increase that he had these symptoms. He's a big lad 6ft 4 and 100kg, but still... that's a hefty amount of the medicine. Apparently it has a long half life, which was behind the decision to stop rather than reduce the dose ... it will keep accumulating and potentially make things worse. It's just a couple of weeks til his next appointment and they should have heard back from the research team by then.

An update in case this is useful to anyone. The hospital carried out a literature review, and found that little is known about sexual dysfunction on isotretinoin, and while cases seem to be rare, there is mixed evidence whether or not it is temporary or irreversible. The consultant was ready for my son to stop taking the medication, but also to allow him to return to the clinic at any point over the next 12 months if he changes his mind. They have also suggested that he resume on a lower dose, and monitor his response on that. He says he'd like to think it over, so he's going back in a couple of weeks. They gave him a copy of the literature review they had carried out. I'm quite impressed at their readiness to take a patient's concerns seriously, to give him the space to make up his mind, and to share the scientific info.

Really pleased the clinic have been so supportive of your son and kept options open for him. I hope the low dosage doesn't have any negative effects for him. If it's any use I've used topical differin since I stopped roaccutane and it's kept the acne in check. Good luck.

@beckyma just wondering if the situation with your son ever resolved itself? My DS is considering going on this drug and some of the things I have been reading about sexual issues are a bit of a red flag.

Hi @Floyd45 sorry I've only just seen this. We consulted with the dermatologist and after they'd carried out a review of the literature, my son decided to continue on a lower dose and he didn't have any further problems.

I have been told personally by a doctor about the mentioned side effects of accutane and he actually steered me away from it. Has your son been on Oxytetracyline before? It could be worth asking the doctor to put him on this at a higher dosage.