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Original poster

People on or who have taken Roaccutane?

48 replies

FelixFelix · 13/04/2015 12:09

Did you specifically ask for it or did your GP offer it?

I've got an appointment tomorrow. I've had very bad acne for over 10 years now and last year did two courses of Doxycycline which cleared it up to a point, but not completely and after finishing it my skin is now back to its worst. I've tried every cream and diet change/skincare routine/magic potion going and nothing makes a difference. I'm using 10% benzoyl peroxide at the moment and it's doing nothing Confused

If the GP doesn't offer it, what do you think the likelihood of them letting me try Roaccutane is if I ask? I feel like it's worth a try (and probably my last option now). Would love to hear other people's experiences!

OP posts:
lurkingaround · 13/04/2015 12:40

It's consultant only prescribed. You need to ask for a referral to a dermatologist.

TywysogesGymraeg · 13/04/2015 12:45

Correct - the GP can't prescribe it. You need to be referred to a dermatologist.

I took it about 15 years ago, after having tried Doxycycline and other topical treatments that solved my acne whilst I was using them. It kept recurring as soon as I stopped the treatment.

Roaccutane is not easy to take - I had incredibly dry and flaky skin for several weeks, and YOU MUST NOT GET PREGNANT whilst taking it. It's also been linked to depression and suicide, though it didn't affect me like that.

But it's a permanent treatment - my skin has been fantastic ever since - I don't get any spots at all any more.

Consultant will probably start you off on half the dose for several weeks to be sure it doesn't affect you too badly, and will probably want evidence that you are using as fail safe a method of contraception as is possible.

LtheWife · 13/04/2015 12:46

It's definitely worth asking for a referral to a dermatologist. Roaccutane is a drug of last resort so GP's like you to have tried everything they can prescribe before giving you a referral, so topical and oral antibiotics, benzoyl peroxide, oral contraceptives, topical retinoids etc. Once I'd been through the whole list I still had to ask for a referral, it wasn't offered automatically. Even then, once I got to see a dermatologist they still wanted to try one last course of a different antibiotic and a topical retinoid before considering roaccutane.

I'm sure you've read up on it already, but do make sure you know what you're getting yourself in to if you decide to go down the Roaccutane route. I'm almost half way through my second month of treatment and it's been brutal so far. I just keep telling myself it will be worth it eventually!

TywysogesGymraeg · 13/04/2015 12:55

Just one other thing - I managed to get my treatment under my work private health insurance. It's quite pricey. You'd be seen a lot quicker if you could go the private route.

LtheWife - it's definitely worth it!

Original poster
FelixFelix · 13/04/2015 13:07

Ah ok that's good to know that they can't prescribe it. I've done loads of research on it so know what I'm getting in to. It definitely seems like short term pain for long term gain.

I've only been to the GP a couple of times for my skin, so have only tried doxycycline and some topical cream (think its 2.5% benzoyl peroxide) which didn't work. I've tried a hell of a lot of other things myself though so I'm not sure what else the GP could prescribe? I can't take hormonal contraceptives so the pill is out of the window (I was on the mini pill for a few years anyway which didn't make a difference).

Also a random question - if you get referred to a dermatologist, is it usually at a hospital or somewhere else where you go to see them?

Thanks for your replies, it's been very helpful.

OP posts:
lurkingfromhome · 13/04/2015 14:48

I went to the dermatology outpatients department at the local hospital.

Your GP may well want you to try various other antibiotics before you get a referral though (Roaccutane is really seen as a last resort after everything else has failed).

I was on a rotation of five different ones for literally 20-odd years before he admitted defeat and referred me to the derm, although in hindsight I think I should perhaps have pushed for a referral some years before. I would take one type until it stopped working, then change to another and then to another and so on until I was back to the first type, always being so British and never liking to make too much of a fuss despite the fact that my acne was so bad I often had to intersperse the normal antibiotics with two-week courses of penicillin as my face was so infected. Aaaargh!

Anyway, all history now as six months of Roaccutane and at the grand old age of 47 I had completely different skin and have never looked back! Grin

lurkingfromhome · 13/04/2015 14:52

Oh and one more thing: side effects can vary enormously, so don't think they will necessarily be awful. I had peeling lips (everyone does) but the rest of my skin wasn't even especially dry. I did have sore joints and muscles (I couldn't exercise but it wasn't so bad that I had to take painkillers or anything) and had to have evening naps as I was wiped by 9pm but otherwise I was totally fine. And it was so very worth it...

Original poster
FelixFelix · 13/04/2015 15:17

Lurking that's a great success story. It must be amazing to have clear skin after all of that time.

I'll see what the GP says tomorrow. I don't mind trying other things she may prescribe but I just know it's very unlikely to work.

OP posts:
lurkingaround · 13/04/2015 15:41

Acne is a right bitch sometimes. It's no fun. treatment depends on the severity.
There are other treatments, but the mini-pill (progesterone only) won't help, in fact it could make it worse. As can any progesterone contraction. Certain combined pills are used as a treatment, and can work well. Topical antibiotics, occasionally spironolactone etc.

If you've had acne for 10 years, and it's persistent with cystic spots, and tried various treatment I would ask can you have a derm referral anyway, in case this new treatment doesn't work. The consultant won't put you on it if s/he doesn't think it necessary. It is the only treatment that comes near to a cure for acne.

lurkingfromhome · 13/04/2015 16:09

Felix, honestly, even now I just look in the mirror sometimes and think wow, the wonders of modern medicine Grin. My skin has been absolutely transformed and I am so so grateful.

I think if you have really severe acne, as I did, topical treatments just never do anything much at all. Maybe some people are lucky and find that a course or two of oral antibiotics will be enough to shift it for good but I think, as lurking says, it can be really really stubborn and Roaccutane is the only thing that just sorts it out once and for all.

I hope you get on ok at the GP and don't be scared of trying to push for a referral. 10 years is a long time to put up with it.

Original poster
FelixFelix · 13/04/2015 16:18

Thanks for the replies. I'm only 24 and have had bad skin since I was about 13 so all of my teen and adult life. I get big horrendous painful cystic spots and then the rest of my face is full of spots but not bumpy ones if that makes sense! I believe I have perioral dermatitis too as I have allergic reactions to most cosmetics and have to be really careful with what I use. I'm just sick of having to wear a mask of makeup to have the confidence to leave the house, and I think the recent warm weather has pushed me to make another GP appointment as I felt stupid going out wearing buckets of concealer and foundation. It's frustrating as people tell me makeup is probably making it worse but when I first had my dd I spent weeks without makeup and it made no difference. And my skin is really dry and flaky so makeup just looks awful anyway. Sorry I'm ranting now!!

Anyway it's good to hear people have had such good results with it. I'm going to ask for a dermatology referral anyway as I'm assuming it would take a few weeks/months to get an appointment. It's a new doctors surgery I'm going to as I've recently moved house and I hope the GP is nice and doesn't think I'm being dramatic!

OP posts:
Notsoskinnyminny · 13/04/2015 16:50

DS was referred to a dermatologist at 15 after trying creams and a-bs for best part of 2 years. After trying more creams his consultant finally agreed to prescribe roaccutane when he was 17. He advised us to do lots of research before making a decision so DS spoke to a friend studying pharmacy and one of her lecturers had a long chat with him about the pros and cons. He decided it was worth the risks and his skin cleared up in a matter of weeks. Apart from scarring on his back and chest you'd never know he'd had bad acne.

His side effects were dry skin and no snot Grin which meant he sailed through the hayfever season but 5 yrs on his skin is still very dry and his hands crack and bleed, especially in the winter, so he's waiting for a referral to see if its anything else or an unfortunate side effect. Regardless he doesn't regret taking roaccutane.

Original poster
FelixFelix · 13/04/2015 16:53

That's great, I bet he feels so much happier now.

OP posts:
Notsoskinnyminny · 13/04/2015 17:00

The difference in him was amazing. I wish he'd been able to take it when he was younger as it would've made high school a lot easier.

Clarabumps · 13/04/2015 17:05

I've been taking a topical retinoid called differing for three weeks now. It's beginning to work now. I can definitely see signs of improvement. I think it's generic name is adapelene?

Original poster
FelixFelix · 13/04/2015 17:18

Clara I've not heard of that. I was given a topical cream to use when I was taking the doxycycline but I can't remember the name of it. Glad to hear it's working for you Smile

OP posts:
mylittlepeanutface · 13/04/2015 17:26

I got told by my doctor that I had to try at least 3 full cycles of different antibiotics along with all the usual topical medication they prescribe before he would consider referring me for accutane. I've had acne since I was 13 and I'm 33 now.
I'm on my third cycle now and my skin has cleared up a bit but I know it will all come back again as soon as I stop the antibiotics.

Original poster
FelixFelix · 13/04/2015 17:30

I probably should have gone straight back after finishing my last lot of antibiotics then Shock I finished them in September last year. I suppose it will be worth all the faffing in the long run if I end up finding something that works.

OP posts:
LtheWife · 13/04/2015 17:59

Definitely give everything the GP gives you a good try, even if you don't think it will work, because you don't want to have to take roaccutane if you don't need to. I was told that one of the major reasons for topical treatments not working was patients not using it as prescribed (not enough product,not using it as often as prescribed or for long enough).

Having said that, if you're getting scarring from your acne (not areas of pigmentation that fade, but pitted scars) then push for a referral to a dermatologist sooner. If you're getting a large number of nodules, cysts or spots that are causing permanent scarring they're supposed to refer you straight away without trying the other options first. If that's the case for you and they try to fob you off ask your GP to go through the map of medicine for acne with you as it states in there very clearly that severe cases should be referred straight away. Give me a moment and I'll try find the link.

LtheWife · 13/04/2015 18:04

Here you go healthguides.mapofmedicine.com/choices/map-open/acne1.html

Roseformeplease · 13/04/2015 18:04

DS 14 is on it now and, apart from dry skin, he is symptom free. He also no longer has greasy hair!

Original poster
FelixFelix · 13/04/2015 18:27

Thank you wife, that's really helpful. I understand the need to give things a try and use it properly. I'm a great believer in finishing a course of antibiotics Grin it's just so disheartening when you've tried so many things and nothing works, so it doesn't fill you with hope when you've got another cream or pill to try.

I'll update tomorrow when I've seen the GP. Hopefully it will go well.

OP posts:
Chiggers · 13/04/2015 20:29

Can anyone help me with a query about acne. I've tried Isotrex Gel, Differin, Acnecide 5%,2 courses o Doxycycline, 2 courses of Tetralysal, a few courses of other antibiotics, the mini-pill, microgynon 30, noriday and Panoxyl.

None of the above have worked in the long-term. By that, I mean that nothing has worked for longer than 2 weeks after stopping the course. I'm at a loss as to what to do now. I'm at the end of my tether. Any advice much appreciated.

Jellybabyjen · 13/04/2015 21:10

I went to a private dermatologist when I was 24, was prescribed roaccutane after years of antibiotics and topical treatments from GPs. Literally 11 years of trying everything! It was a miracle for me, skin is so clear now (I'm 31) and hardly any scarring. It did cost in excess of £3000 though to go private and I only saw the dermatologist twice so, once at start once at finish so I'm presuming the cost was mostly medication. I was told that as well as the side effects (which luckily I didn't get many of & only midly) the reason NHS is so loath to prescribe it is because of the cost.

LtheWife · 13/04/2015 21:26

I totally get the whole disheartening thing, I've been backwards and forwards to the GP trying different options for over 20 years! Roaccutane has been mentioned a few times over the years but I only pushed for a referral last year. I so wish I'd pushed earlier.

Best of luck for tomorrow.

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