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?

Really interesting to read everyone’s experiences. I had acne throughout my teenage years, visited GP and dermatologists but nothing worked. My Mum refused to let me have Roaccutane because of the links with mental health, but by the time I was old enough to consent, my skin had cleared up by itself.

My friend took it recently and it has cleared up her skin dramatically. She monitored her mental health closely and said she did start to feel low towards the end of the treatment but managed to complete it and feels fine now. Her skin looks great. She got incredibly dry and cracked lips, dry skin on her arms, dry inside her nose, dry inside her vagina so needed lube for sex, and aching joints. But she says it was worth it a million times over.

I took it in my late twenties. I saw a more forward thinking dermatologist (on the NHS) who preferred a much lower daily dose for a longer period of time. As a result I didn't have any of the reported side effects. I just had to go in every 3 months to have my bloods checked. I also had to sign a form to confirm I was taking precautions to not get pregnant (I was single at the time anyway).

I should add to that I had horrific cystic acne in my jaw line. It was awful, but luckily the roaccutane worked for me. I still get a the occasional hormonal spots, but nothing like acne.

Take it if you are offered it. Life changing. The side effects don't last forever.

This is very difficult for me to write but I owe it to my daughter to tell you of our experience with this drug.
My daughter was prescribed this drug for, in her case, mild acne when she was 14. She was never on more than 40mg.
She was the happiest child with the brightest outlook and attitude. No MH issues at all. We were told that this drug can cause low mood and depression but that those who took their lives on this drug did so because they were distressed about their skin. We felt sure that we would notice if our daughter became depressed, and agreed to start treatment. Next week it will be 1 year since we discovered my beautiful child dead after having taken her own life. She was 15. There were no signs.
This drug can cause random suicidal impulses which can come out of the blue and be overwhelming. It doesn’t happen to everyone but it does happen to some and there is no way of knowing who it will affect. I understand that for some it has been revolutionary but for others it has the most terrible side effects, sometimes permanent. Ask yourself, if you were offered a bag of sweet and told some of them were poisoned would you take any?
As an adult you may be better placed to deal with the MH issues than a teenager. Your self awareness may be better than that of a hormonal teenager, especially one who had never been warned about the true danger of this drug, but if you are in any doubt please look at the figures on the MHRA website. I wish I had known about this before I agreed to this poison for my daughter. And it is poison. It was developed as chemotherapy for brain cancer when it was noticed that it helped to clear patients skin as a side effect. Why anyone thinks it’s a good idea to take chemotherapy unless they have cancer horrifies me. But it is a billion dollar drug for the manufacturers. That’s why.
Be careful of what your dermatologist tells you. Ours lied about it’s safety and put my mind at rest about my fears over what I had read about this drug. Made me think I was worrying unnecessarily. That is a mistake I have to live with for the rest of my (hopefully short) life. Obviously you will make your own decision but I felt I should share my experience with you. I owe it to my daughter to do that.

@DevastatedandDistraught

I'm so sorry to hear your story. Thank you for being willing to share that here; I appreciate it can't have been easy to do that.

Amazing!! Never looked back.
Make sure you have tons of moisturiser, lip balm, eye drops, nasal spray and lube though- it literally sucks all the moisture from your body and you shed skin like a snake. The dryness actually lasted far beyond the course of tablets- maybe 18 months before I actually started to not need lip balm every ten minutes.
I saw results after about a week although my course lasted 8 months. Happy to pm my before and after pictures if you wanted to see how drastic the result was.

I don’t have any personal experience but happen to watch this American YouTuber Taylor who posted lots of videos about her experience taking it and tips to keep skin moisturised, etc. It seemed to work well for her.

m.youtube.com/playlist?list=PLamn7T7PBYiQnBOVle4psqrNgN9DpQKYD

I finished my course a year ago.

I won't lie, I struggled with it. I ended up in pain with my joints and needed to go to the physio. My eyes were so dry and sore. I did end up getting quite low in mood but I think it was because I was feeling shit physically with being in pain. The joint pain ended a week or so after I stopped but it was pretty bloody bad.

That said, I would take them again if I had to in a heart beat. It was worth it to no longer get sore cystic spots.

I am so sorry @DevastatedandDistraught

If you have had children then take it if you haven't then don't. There are fertility side effects which are not well documented with roaccutane.
My experience was really good, I only had dry lips. Unfortunately, it came back 4 years later but I'm ttc so wouldn't go back on until I'm done trying for babies. I spoke to a few nutritionists who have linked the roaccutane to female infertility (which isn't the issue in my case, but I just wouldn't risk it again). I hope that helps you x

@devastatedanddistraught so sorry to hear about your daughters passing. Roaccutane shouldn't be prescribed to children under 16 maybe even 18. I'm so heartbroken by your story x

@Fawnandwren with respect, that's a dangerous idea to post when it's not technically true. There have been studies that have shown deterioration of ovarian reserve on accutane which also show the reserve markers go back to pretreatment levels after the course of accutane is finished. That's not the same as suggesting it has a negative impact on fertility or causes infertility, and I would hate for someone really struggling with skin to be put off by the idea that it would impact their fertility.

I don't think it's dangerous to suggest OP considers this, I didn't know when I took it. I had great results for 4 years then it came back. I think if you can put off until you have children, you are minimising that risk do it causing harm to your fertility. Fertility is linked not just to the reproductive system, but also the gut. I have spoken to 3 different nutritionists and all have mentioned the roaccutane causing fertility issues for me, however we have since found it may be my DH now. If I had known now, I would have ttc sooner or waited to take roaccutane. I would take it again, after having children. Again I'm speaking about MY personal experiences. Just like everyone else is. Nothing dangerous at all, so chill out.

Both my children ended up on this at different times, daughter reports that she always has to use sun screen now on her face, as the skin is still thin

Well it definitely didn't cause fertility issues for me. I have PCOS and was told by a gynaecologist I may never have children. A short time later I started taking a long course of roaccutane. After finishing the course I got married a year later and fell pregnant in the same month. With DC2 again fell pregnant first month of trying. I don't know anyone personally who has had problems with fertility after taking roaccutane.

I took it about 2 years ago at 37, it changed my life. I went through the ‘it gets worse before it gets better phase’ and that bit was horrendous but it was a gradual improvement after that. My course was around 8 months and I’ve not had an outbreak since.
I was lucky and the only side affect I suffered was dry skin and super dry lips but I soon got used to it and that stopped as soon as the treatment stopped.
It’s only now I have ‘normal’ skin that I realise how much my acne affected so many aspects of my life, confidence, relationships, career.
Give it a go and best of luck !

Oh and I had a baby afterwards at 39, took me 3 months to fall pregnant so no issues.