Roaccutane – the next generation

There can’t be many families with two generations on Roaccutane – the strongest acne drug there is. But that’s the reality for our family.

My eldest’s acne, already classified as ‘severe’ went downhill very quickly over the course of the autumn. From a situation where we thought he might need to go to a dermatologist and might need to go on Roaccutane, we were very quickly in a situation where there really was no alternative.

In August he developed a large lump at the size of his nose. We thought it was awful, but looking back at photos from August, his skin looks so clear compared to how it is now. A few weeks later, he developed a matching lump on the other side of his nose. Then in September he got two lumps at the top of his nose, which meant he could no longer wear his glasses and they were starting to obscure his vision. I already had a GP’s appointment booked for him, but at this point we got him an emergency appointment. I wondered if it would be possible for a doctor to burst them? I’ll admit, I even kept him off school that day. He had been so brave and strong about it all, but at this point it really started to get him down.

Sadly, the spots couldn’t be burst, but he at least got his referral to the dermatologist.

But when the letter came through a few days later, we were devastated. It was for the ‘dermatology nurse’, not the dermatologist. And it was in four months’ time.

We couldn’t wait four months. I kept telling him (and myself) to remember people in much worse situations – people with cancer and the boy we’d seen on TV who’d had a stroke at the age of 12. This was only skin. BUT there are doctors whose job it is to look after people with bad skin. And he really, really needed to see one of those doctors.

Luckily our GP understands that and he emailed a photo to the dermatologist and he got an appointment with the actual dermatologist within a month.

In the meantime, we got his blood tests done, so that he would be ready to go on Roaccutane as soon as he saw the dermatologist.

When he had his appointment, there was no discussion about trying alternative treatments beforehand. Having used two types of tablet and three types of prescription lotion over the last couple of years, there really wasn’t anywhere else to go. The large lumps on his face are ‘nodules’, a particularly severe form of acne which doesn’t respond to treatment other than Roaccutane.

Nobody wants their child to go on such a strong drug, with so many potential side-effects. But the potential effect on his mental health, confidence and self-esteem without it, not to mention the scarring and the uncertainty of how long it would last (let’s not forget, I’ve had acne myself for over 30 years!) meant we had no choice.

So my 15 year old son is on Roaccutane. He’s starting at 20mg a day (the dose I was on, although now I’m on 10mg and will be going down to 5mg soon), which will increase to 40mg after a couple of weeks. That is seriously strong stuff, although apparently he could go as high as 60mg. Obviously the potential for side-effects increases with the stronger doses, so 40mg sounds plenty high enough to me.

I’m hoping we will see some improvements by Christmas and that my beautiful boy will be properly back to his handsome best by his 16th birthday next June. His good looks have been hidden by spots for too long. It’s time we got our beautiful boy back.

Roaccutane, Acne, Skin, Son, Teenager

Author: Sarah Mummy

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23 Comments

  1. So sad to read this, Sarah. It must be awful for him but also for you, as you know exactly what he has to go through. I hope things improve quickly.

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    • Skin problems affect confidence. I so feel for you and your son. With all the news about childhood illnesses and cancer, it’s just so unfair for us not to be able to do anything for our children. I say this with a poorly 10yo at home today. Yes some are worse than others but it’s the most important thing to us when we can’t make it better. I can’t wait to see your son’s good looks back again. Ramble over!

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      • Thanks very much! I’m hopeful that the good looks will be back soon! He’s coped remarkably well, better than most teens would cope, but it has still dented his confidence. It’s good that there are dedicated doctors to deal with skin and I’m so grateful he was able to see one fairly quickly.

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    • Thanks very much! I hope so too. I feel that as he’s so young and he’s not had it for 30 years like me, that it should improve quickly. 70% of people make a full recovery on Roaccutane and never have to go back on it (or any other acne medication!).

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  2. He sounds like he’s been so mature about it. I hope he sees results quickly. Great that you have been pro-active. I had acne as a child (moderate, not severe) and I used to spend all my pocket money on creams that didn’t work. I wish my parents had taken me to the GP.

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    • That must have been hard for you! I was lucky that my parents took me to the doctor at 14. I have been on some sort of prescription medication pretty much constantly since I was 16 (although mainly topical, rather than tablets). Being an old hand at it myself, I’m determined to get my son sorted as quickly as possible!

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  3. Hi Sarah, ironically I was thinking of you and wondering whether you had taken him yet. I saw my friend who I mentioned to you previously last week and she said both her sons’ Roaccutane dose had been increased to 40 mg and she was anxious about the strength of it but knew deep down that it was the only way forward for them both. Ultimately they and your son are in expert care and are being carefully monitored. It is debilitating for any of us when we don’t feel our best but it is definitely tougher when you are going through puberty and finding your way in life. Yes there are people going through other difficult scenarios but everyone’s crisis or tragedy is relative and we can only focus on those nearest to us. Well done for giving him so much support and I really hope he regains his confidence and can get on with the joy of being a teenager without having to stress about his skin. Keep us posted. xx

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    • Thanks very much! I’ll definitely be blogging about his progress from time to time. It’s interesting to hear that your friend’s sons were on 40mg too. It does sound scarily high but, like you say, they’re in good hands and are being monitored carefully. I’ll just be very happy to see an improvement in him and I know he will be too! x

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  4. The poor thing, I can totally see why you have decided to go with the treatment, it is such a funny time for boys anyway at this age, they become very aware and conscious about the way their looks and it sounds really tough on him. I hope that things start to improve quickly for him.

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    • Thanks very much! If my experience is anything to go by, it should start to work pretty quickly! I’m lucky that he’s not actually as bothered by his looks as many boys, but he’s still desperate to be rid of it and be back to normal.

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  5. Aww! Bless him….It must be horrible for him but it sounds like he is being fantastic about it.
    I hope the treatment works. Good luck x

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    • Thanks very much! I’m feeling quite confident about the treatment as I know how well it worked for me (although there were blips along the way!). x

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  6. This sounds like such a tough choice for you both. It seems there’s a lot more attention directed towards boys’ looks than there was when I was growing up. Back then, girls were the focus, and boys could get away with more, but I can see that’s changed now, and as someone who had bad eczema on her face when young, I know these kids of things can be bad for confidence and self-esteem. I hope you get the results you want with this drug.

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    • Thanks very much! I’m feeling pretty confident about it. We really had no other option and I’m just glad it’s available. I think with social media there’s so much focus on both boys’ and girls’ looks these days – far more than when we were young!

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  7. Acne really is a miserable condition for those afflicted. I myself suffered severe acne as a teenager and into my early 20s which led to me taking Roaccutane, so I’m well aware of the side effects. The good news now though is that my skin is beautifully clear and has been ever since the treatment so I am wishing the same for your son and you too. Let’s hope it works quickly for you all.

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  8. Oh the poor thing! It sounds like you’ve made the best choice you could, if it was my kids I would do exactly the same x

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  9. I can not imagine how hard it is for both of you. Yes we all know that it is what is on the inside that counts, however, I do believe that it must effect confidence. I hope that he starts to see an improvement soon.

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  10. Oh, I am so sorry your poor son is going through this. At least he has you to support him and help him through as you have been through it yourself. Hope it works and fast xx

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  11. He’s still a very good looking boy and it’s so unfair this has affected him like this, bloody acne. I hope it works really well for him with no side effects!

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  12. Can totally sympathise with you – we too are two generations who have been on Roaccutane. Myself in my late teens and more recently my 17 yr old son. He has been on 30 mg for 6 weeks and is going up to 50 mg. He has been fine on it bar dry skin and things are improving slowly. My older two sons were different; one had no acne the other did but managed on antibiotics for years. Good luck x

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    • It’s good to hear things are working out well for your son. I can already see slight improvements in my son too. It’s also reassuring to hear that only one of your boys needed it. I have two younger kids and I dread all three of them having to go through it. I don’t think the other two would handle it as well.
      Would you believe I am still on Roaccutane myself? I started on it when I was 40 and I’m 43 now and completely unable to come off it, although I am right down to 5mg now. x

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  13. So sorry to read this, what a brave son you have. I hope the medication helps quickly. xx

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  14. Aw Sarah so sorry to read this, but I am sure he has the best support in you and the rest of the family. It is so hard to see your children suffer, and I am sorry that he is going through it at the moment. Hoping that his skin starts to recover soon. Hugs x

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