Please give me your experiences of taking roaccutane as an adult

[Fallingstars20]

I’m sick of struggling with my skin for over half my life and can get a referral for roaccutane. Nothing else has worked for me really and it feels like a last resort.
Have never taken it before and have heard a lot of horror stories about the side effects. I’m in my early 30s, generally physically healthy and healthy bum, I’m not ttc/definitely not pregnant and have a copper coil in for long term contraception. I’ve suffered with anxiety and depression on and off for my whole adult life and am slightly concerned about the MH side effects of the drug.
Any experiences as an adult and would you recommend?

I can get a derm referral without a GP appt through my work private health insurance at the moment so I think I will look at doing it. Thank you all for your experiences.

It's nasty stuff and is currently under review because of links to suicide. www.google.com/amp/s/amp.theguardian.com/society/2019/dec/27/suicides-linked-to-acne-drug-roaccutane-as-regulator-reopens-inquiry

My neighbours son took it a couple of years ago and ended up in psychiatric hospital. Not worth the risk.

@yester I think these claims have been made since the 90s but I didn’t think they’d categorically proved a link? Like others have said, unfortunately bad acne can lead to depression and suicide too. Unless you’ve had acne it’s hard to understand the impact it has on your life.

Just to give you a heads up you won’t be able to get it or start treatment until after the whole coronavirus thing is over. My dd started taking it in February and started to have excellent results but when lockdown happened the dermatologist (private) told us there were issues sourcing Roaccutane and it wasn’t a given that she would be able to pick up prescriptions continuously meaning there would be gaps in treatment which would make it pointless pursuing it at the moment. Also you have to have monthly consultant appointments and regular blood tests - all of which will be suspended under current rules amid coronavirus. Just thought I would share our experience. Dd is very upset and cannot wait to start back on it again. She had some dryness but other than that no major side effects and the difference in 6-8 weeks of use was amazing.

I took it in my late 20's. It worked amazingly after all other treatments had failed and I had no MH side effects. My skin was unbelievably fragile during treatment (small knocks could scrape a chunk of skin off ) but went back to normal a few weeks after stopping. I've barely had a spot since and that was 6 years ago.

Side effects: super dry lips; towards the end of the course, got sore ankles. I had night vision loss which I didn't realise until I looked into my child's cot and couldn't see anything. It was quite scary and could have be dangerous if I was driving. My issues were exactly the same as Crinketinkle. My hormonal spots have come back and am now thinking about asking for round 2.

@crazycrofter it is currently under review only December 2019. I am very aware of the impact of acne and how soul destroying it can be as my DH has terrible acne and so now does DS1. DH is still very conscious of his skin.
But I also am sadly very aware of the terrible effects that side effects can have. I have bipolar and am no stranger to suicidal thoughts as well as to the horrific things medication can do to you. I think people need to be hugely aware that this is a potential side effect as then they are able to recognise that if they start feeling suicidal whilst on them that the drugs may be the cause and can act accordingly.

I had 3 months of roaccutane treatment last year and it was the best thing I did for my skin.

I was on antibiotics for years with my skin...somehow my docs were happy with me taking them daily for long term but I wasnt. I must've been at docs over 10 times for skin issues, each time I tried to come off the antibiotics my acne came back again within weeks. It was only when I asked to be referred for roaccutane that they did, it was never suggested no matter how many times I was there (and clearly the antibiotics were a temporary fix) and the whole process to get there still makes me a little bit angry when I think about it!

But anyways roaccutane was great , it was a pain in the hoop having to go in to dermatology every month and be pregnancy tested before you got the next months prescription (I live in a commuter town of a major city and the closest dermatology was in the center) but it was 100% worth it. I'm currently pregnant and my skin is a riot but other than that my acne has never returned to the extent it was for years before.

I had it when I was at university, so I was 19 I think. I can’t really remember much about it but I still had terrible acne for 15 years after which seems to go against what everyone else is saying!
It was really drying as I recall so I had terrible acne plus a red peeling face. I must have looked bloody awful.

The only thing that sorted me out was having two babies then discovering acnecide. It costs a tenner from boots and I’m so annoyed I hadn’t discovered it years ago.

I hope roaccutane works for you though!!

Early 20s I had horrendous acne. I didn't know about Roaccutane until a pharmacist friend encouraged me to research it (she herself had completed the course with great results). By that point I was desperate for a referral as I'd tried every oral and topical cream available OTC and on prescription. Eventually a very kind locum made the referral. My spots worsened at certain times of the month so I kept a photo diary on my phone when the acne was at its worst. When i saw the dermatologist, the acne had calmed down (typical) but when I showed her the photos of just weeks earlier she instantly agreed to put me on roaccutane. It was quite tough I won't lie. My skin was terribly dry and peeling, I remember having nosebleeds, had to slather on tons of suncream. Checking into hospital monthly for a bloodtest and answer a questionare about my mental health was a minor inconvenience. I did feel slightly down whilst I was on the tablets but nothing significant enough to stop taking them. In fact I'd felt much, much worse after taking some contraceptive pill given for acne a year before. Its been over 10 years now and other than the occasional hormonal spot I've remained acne free. I would totally recommend it for severe acne.

My ds onnit now. Gp referral wasn’t that long. Has blood tests now and again and fine. They keep asking about his mental health... good. In fact he’s brighter because progress is good! He’s exceeded the allowed dose and probably on his late prescription of it now.
Side effects... he is always tired and sleepy and achy. He has eczema and nose bleeds and very dry lips. You need to be careful. In the sun. He’s got scars now but hoping they improve. His last appointment last week was by telephone and I had to go into hospital to collect the prescription.
I would imagine they aren’t taking new patients at the moment As they need to See your skin.

I had three courses in my twenties when it was still experimental. By the end of the third course, I was prepared to stop it even if they suggested another as the dryness side effects were becoming unbearable, but they were happy at that point and I tend to get hormonal spots and the odd boil now, but nothing like my acne was before I started it.

I've been on and off anti depressants since my late 20s (hormonal depression) and the time I was on roaccutane was one of the times when my MH was stable, so I guess it's something to keep a close eye on, but don't let it scare you off if your skin is really bad.

I took it in my late 30s, and DD (23) is on it now - about to finish the course.
Neither of us had any problems other than dry skin, including eyes and inside nose.
It has made such a difference to DDs confidence, and her whole life really.

I took it when I was 18 after years of awful teenage acne. It made a huge difference and was the only thing that worked. I echo everyone else in terms of side effects (the dryness) but I didn’t experience any issues with my mental health.

Unfortunately it hasn’t completely cleared my acne. I’m 34 now as still have problem skin, break outs etc (some of which have required treatments from the GP, but not bad enough for another course). My skin is nothing like it was, but it’s not completely cleared it all like it has for some people

I took it when I was 35 after being miserable with my skin for many years. My GP referred me to a dermatologist. I had to see them once a month and get a pregnancy test before each new prescription. I worried about taking it due to people saying stuff ( who had never actually taken it themselves). At each monthly appointment they checked on my mental health they are very careful, they don’t just prescribe it and not check on you. I wish I had taken it years ago it has been amazing my skin is now completely clear and it’s been two years.

I used it a few years ago. My MH was fine but I stopped after a few weeks as I couldn't cope with the dry eyes. Dry skin and lips I could deal with but I needed to use eye drops every 10 mins to keep them from hurting. Years have passed and I still have painful dry eyes. They said the dryness was reversible but it wasn't. I still have painful eyes and use eye ointment frequently. No longer wear eye make up as is slides down my face with all the ointment. Struggle to stay up past 9pm as eyes too painful. Wish I'd never gone on it. However, my friends and DH used it and had great results with no lasting problems.

I went on it at 18 - as many others have said it changed my life immeasurably for the better! The only bad side effect for me was very dry lips, which I was much happier to live with than my terrible skin. I’m now in my 30s and have had great skin ever since - I seem to remember my dr saying roaccutane decreases the number of pores/active pores in your face permanently so your chances of getting spots going forwards are massively reduced? I may have made that up!

I took it when I was 23. The side effects can be a pain (extremely dry lips, skin and scalp) but other than those I got on well with it and it worked wonderfully at clearing my skin. I’m almost 30 now and have had no issues with my skin in 7 years, even during pregnancy. I had fragile mental health in my late teens and early 20s but roaccutane didn’t cause any issues there either. The effect it had on my confidence was 100% worth the risk for me.

I don't know about roaccutane, but I know a number of people who have had chronic vitamin A toxicity caused by accutane. I'm interested that many of the side effects eg dry lips, dry skin, problems with alcohol, join pain, dry eyes, nosebleeds (because high amounts of vit A induces vitamin K2 deficiency) are all symptoms of vitamin A toxicity.

Anecdotal evidence in a health group for people with vit A toxicity suggests that supplemental vitamin A (eg accutane use) gets the body storing vit A in the liver and actually lowers the levels in your blood, which may be why vit A supplements or drugs like accutane reduce the symptoms caused by high blood vit A. The trouble is that vit A is also toxic to the liver, especially when the amount of vit A in the liver gets high.

If you've not already tried it, I'd personally try high dose zinc for acne and skin issues (by high dose I mean high, but not exceeding the recommended upper limit). Zinc deficiency is a really common cause of skin problems, and zinc is needed for the body to properly transport and use vitamin A, so you might get even better benefits from zinc than from a vit-A-type drug because it takes the vitamin A stored in your liver and helps it get to where it can be used properly by your skin. Obviously talk to your doctor about this first; I'm not a medical professional so I'm only talking about what I personally would do.

I had awful skin for 20 years - cystic and acne rosacea. From the age of 12 to 33, I was miserable with it. Hid behind a mixture of too much makeup, and my hair. It affected my confidence with boys, uni, work, everything. I tried topical treatments, antibiotics, the pill, my mum bought me all sorts of expensive skin care. Nothing made much of a difference until I got a new GP, who almost immediately referred me to the dermatologist, and got roaccutane. It was life-changing for me.

The almost 10 months of dry, fragile skin, dry hair, dry eyes, dry vagina, and insomnia, were worth it, and I wish I’d done it years earlier. Suffering throughout my teens and twenties wouldn’t have been such a challenge.

I’ve had trouble with my mental health a couple of times, but not when taking roaccutane. As long as you know the risks, I’d recommend anyone to try it. It transformed how I feel about myself; and I wish I’d done it years earlier.

I have just been prescribed it a 4th time. In early 40s. I took 2 courses in my early 20s and then my skin was fine, with the occasional AB course, over the next few years. However since having ds 7 years ago my skin declined again. Finished last course 3 years ago, just started another 2 weeks ago, via NHS after gp referral last September. Video consultations at the mo, and I then pop into a treatment centre for blood test and to pick up prescription. Only side effect dry lips, though I am currently experiencing the early break out which I am all too familiar with... In another month I will feel like a completely different person.

I have had two courses . One as a teenager , and second in my late twenties . Some mild side effects , such as dry eyes and lips but it was the only thing that helped my skin .i had blood tests to monitor for other side effects but was definitely worth it .

Others said it, OP. It works and works amazingly in a matter of weeks. Wonder drug.