Post-Accutane syndrome support: find others

Adults with post-Accutane syndrome (PAS), where side effects of isotretinoin can last after stopping, can join SIDEfxHUB’s four small WhatsApp groups, shared with people who have PSSD and PFS.

PAS isn’t only about sex. The 2022 diagnostic criteria say the name often includes problems with thinking and suicidality, and that depression can come with or without sexual changes.

The UK Roaccutane leaflet says there have been reports of “long-lasting sexual problems where the symptoms have continued despite stopping treatment”. The way into a group is our free registry.

Elliot took Roaccutane at 17. About 13 years later, he told Moral Medicine how alone he’d felt. Watch the next two minutes if you’ve ever wondered whether anyone else gets it.

Play video: Elliot on feeling alone with PAS

He knew there were Facebook groups for people with lasting damage, he says, “but I didn’t want to be one of them”. Years later he still says, “I know I’m in this alone.” Then he asks anyone watching to talk to him. You want “a friend who’s going through this”, he says.

Is there a support group for post-Accutane syndrome?

Yes. SIDEfxHUB runs four small, private WhatsApp groups, and every one is open to people with PAS. Each covers all three conditions and one region, so members share a language and a time zone:

• UK and Ireland
• Scandinavia
• Benelux, France and Italy
• US and Canada

The groups are peer support: people who live with these conditions, talking to each other. People bring hard days to them, our groups page says, such as an appointment that went badly or a symptom that came back.

Joseph took isotretinoin at 13. For years, he says, doctors told him the medicine couldn’t be responsible. Online he found comfort with people going through the same thing. His clip is in French; our translation is below it.

Play video: Joseph on finding others after isotretinoin

“It’s important to be in communities,” he says. “It lets you tell yourself: OK, I’m not mad, I’m not the only one.”

Why are PAS, PSSD and PFS in the same groups?

Because the three conditions look alike. In 2022, doctors and researchers proposed diagnostic criteria for all three in one paper. They note reports of lasting sexual problems after isotretinoin with “a similar profile” to PSSD, which follows antidepressants, and PFS, which follows finasteride.

The shared changes include less feeling in the genitals, a weaker orgasm and lower desire. The overlap goes beyond sex too. Problems with thinking and low mood come up across all three, and our page on what PAS feels like puts the symptoms side by side.

So someone with PFS may know exactly what numbness or brain fog feels like, even though their medicine was a hair-loss tablet and yours was for acne. These are proposed criteria, written by people who work with patients, and nobody has yet counted how often PAS happens. In the groups, that matters less than being understood.

Elliot makes the same point near the end of his interview. People with these conditions need a shared voice, he says, and “that comes from knowing each other”.

How do I join a WhatsApp group?

You join through the SIDEfxHUB Registry. It’s free, you don’t need a diagnosis, and a nickname is fine. The groups themselves are for adults.

Our WhatsApp groups page sets out the steps. An admin lets each person into a group by hand.

Other members of your group can see your number, and WhatsApp is run by Meta.

Join the registry

What can I do if my doctor doesn’t believe me?

Many people say it took time to be taken seriously. Bring the leaflet line, and your dates. These medicines help many people, and if you have side effects, that’s a decision for you and your prescriber.

Not sure whether you have PAS? Our guide for when you think you have PAS starts with your dates and your doctor. If low mood ever turns into thoughts of suicide, call Samaritans on 116 123, day or night.

Report it: it helps everyone

A doctor’s note helps you. A report to the medicines regulator helps everyone else: it is how patterns get noticed. You can report it without a doctor agreeing.

• No proof needed. A suspicion is enough, even years after stopping.
• Where: the Yellow Card scheme in the UK, MedWatch in the US.
• Use the right words. PAS has no medical term yet, so name each symptom and say it continued after stopping. The MHRA asks for detail “particularly if a side effect continued or started after treatment was stopped”.

Our reporting guide walks you through it

What else do people ask?

What if there’s no group for my country? You can still join the registry. The groups only work when people share a language and a time zone, so if a request is turned down, it’s almost always about where you live. Email contact@sidefxhub.com and we’ll help you find the right group.

Can I join if I’m under 18? Yes, you can join the registry. The WhatsApp groups are for adults, the join form says. Our page for parents of teenagers on isotretinoin may help the adults around you.

Is there an Accutane recovery forum? Other people run groups and forums. Elliot mentions Facebook groups, and Reddit forums where people post about Accutane. We don’t run them or check what’s said there. Our own groups are private, and nobody there can promise a cure. Does PAS go away? sets out what is known.

If what you’re missing is what Elliot called “a friend who’s going through this”, start with the registry. More on the condition is on our post-Accutane syndrome page.

Sources

1. Roaccutane 10 mg and 20 mg soft capsules, patient leaflet, Electronic Medicines Compendium (EMC 100633), last revised April 2026. Section 4: side effects are “generally reversible after changing the dose or stopping treatment, however some may continue after treatment has stopped”. Also: “There have been reports of long-lasting sexual problems where the symptoms have continued despite stopping treatment”. Read 22 October 2026.
2. Healy D, Bahrick A, Bak M and colleagues. Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin. Int J Risk Saf Med 2022;33(1):65-76. Features of PSSD, PFS and PRSD (their name for lasting sexual problems after isotretinoin) “commonly include decreased genital and orgasmic sensation, decreased sexual desire and erectile dysfunction”. Section 5: additional isotretinoin effects “can occur independently of any sexual difficulties”, including depression, suicidality and cognitive impairment. “Reports of an enduring sexual dysfunction with a similar profile to PSSD and PFS were published in 2014 and 2018.” The term PAS “often refers to what is termed PRSD here but equally often appears to include” cognitive effects without sexual difficulties.
3. Commission on Human Medicines, Report of the Isotretinoin Expert Working Group, 26 April 2023, published by the MHRA. Section 2.3.1 (page 21) quotes a comment received through the call for information from a member of “online social media support groups”. Section 5.2 (pages 72 and 73): “frustration amongst some individuals that they were not believed when they raised concerns about sexual side effects”, and concern about a lack of services “for those where symptoms had not resolved after stopping and had continued long term”.
4. SIDEfxHUB, Join our WhatsApp groups, read 21 October 2026. Four groups: UK and Ireland; Scandinavia; Benelux, France and Italy; US and Canada. They are “for people living with PFS, PSSD and PAS”, and “Every group covers PFS, PSSD and PAS”. Access runs through the registry, no diagnosis is needed, a pseudonym is fine, and an admin approves each request by hand. If a request is declined, “It is almost always about where you live”, with help by email. SIDEfxHUB Registry join form, community.sidefxhub.com, read 21 October 2026. “You do not need a diagnosis”, and a first name or nickname is enough. “Our WhatsApp groups are for adults.” “Group members can see your number. WhatsApp is run by Meta.” An admin adds each person to a group.
5. MHRA, Drug Safety Update: isotretinoin, introduction of new safety measures, 31 October 2023. Reports can be made of reactions experienced at any time, “including historic adverse experiences with medicines”, “particularly if a side effect continued or started after treatment was stopped”.
6. Moral Medicine, He Took Accutane at 17. His Life Never Returned to Normal., interview with Elliot, 28 January 2025, embedded here as an extract from 1:24:00 to 1:26:23. Facebook groups, “but I didn’t want to be one of them”, at 1:19:50; Reddit forums at 1:00:24. “I know I’m in this alone” at 1:24:16; “if there’s anyone watching this who wants to talk to me” at 1:25:09 and “you want a friend who’s going through this” at 1:25:15; “that comes from knowing each other” at 1:26:11. Quotes are from YouTube’s automatic captions. His story on our site: Elliot’s story: Accutane at 17.
7. Moral Medicine, French Patient Shares His Long-Term Struggle After Accutane (isotretinoin), interview with Joseph, 17 November 2025, in French, embedded here as an extract from 6:36 to 7:12. At 6:37 he says that apart from the internet, “où on trouve du réconfort avec des gens qui subissent les mêmes choses que nous”, doctors say it is impossible; at 6:49, “c’est important d’être dans des communautés. Ça nous permet de se dire OK, je suis pas fou, je suis pas le seul”. Our translation, from YouTube’s automatic captions.