Cystic acne and PCOS - Roaccutane?

[Candolim97]

I’m having a really bad time with my acne, had it for 11 years but with diet and a skincare routine it was some what manageable
I think I accepted I’ll never have normal/good skin but mild acne was bareable and I could get on with my life

Recently though, nothing has changed in my life (no new diet, products, stress or anything) and I’ve flared up horrendously with cystic/pustular acne on my chin and jaw before my period. I’m so depressed and finding it hard to leave the house (gosh that sounds so dramatic sorry) but even when I psyche myself up beforehand and think no one cares how I look etc, I still inevitably get stares. Also, yesterday my foreign Uber driver asked what had happened to my face so embarrassing! I don’t think he meant to come across so blunt/rude as English wasn’t his first language

Tried antibiotics in the past they don’t bloody work and I think they’re not a sustainable treatment anyway. I don’t eat refined sugar or dairy, drink spearmint tea daily. Mainly low carb. Benzoyl peroxide, BHAs, AHAs helped in the past now not cutting it. Unlike other pcos sufferers I’m not overweight (almost underweight), but I do have hirsutism
Yaz (bc) gave me bad side effects so can’t rely on that

I’m thinking I may need to resort to Roaccutane and was wondering if anyone had any experience taking it with hormonal adult acne. What’s scary is that I’ve heard taking Roaccutane with pcos only temporarily clears acne, a dermatologist on this morning with pcos has taken 9 rounds. to make matters worse I have eczema as well, so I’d probably have to ask for a lower dosage
Sorry this is very long ramble, but god I hate pcos!!
Has anyone managed to get there stubborn hormonal acne under control? Really desperate here

I had the most persistent and resistant acne when I was younger and accutane saved me. We tried everything else first. I’m on my second round 25 years later due to hormonal breakouts a low dose and coming up a year on it. Thrilled with the results. In my case, nothing else worked. This has been a god send.

nzeire wow that is excellent I’m glad it worked for you :)
Did the extreme dryness stop when you finished the course?

I’m a massive fan! Been on it 9 months and I get compliments on my skin from people who didn’t know me before which I never dreamed would happen. It took a while to work though and my skin got very bad the first month.

It did the job for me, wish I'd taken it decades earlier (hormonal but not PCOS I don't think)

Changed my life. All the (mild) side effects disappeared after I stopped using it including the dry skin. My skin was flawless for a year and then monthly hormonal spots came back but very mild. I am three years after finishing it. I went out today with no make up on. It also got rid of black heads and existing red marks left by spots.

It’s the best thing I’ve ever done (except children of course!) My skin has been clear for 5 years now, not too dry, not too greasy; just right! The 6 months of extreme dryness and outbreaks were so worth it. I too wish I’d been more persistent and insisted on it much earlier. It has honestly changed my life...the days of hiding inside because of the latest outbreak are no more. Go for it!

Have you considered Spironolactone before reaching for the WMD that is Roaccutane? It depends on the person but it has proven very effective for many PCOS sufferers with persistent acne, including those who did not respond to Roaccutane. Spironolactone has the added benefit for treating hirsutism in PCOS as well since it has an antiandrogenic effect.

Botemp do you know if Spiro can be prescribed for acne by GPs? DD1's acne has recurred since stopping the Yasmin, she doesn't really want to continue the pill and has had depression, so is a bit wary of roaccutane. Spironolactone could be the answer...

@Marjpoops sprironolacone has to be prescribed by a dermatologist as treating acne is an 'off label' use for the drug. Your DD1 would probably be able to get a referral from her GP if she has tried yasmin, topicals, antibiotics. Worth a try as I've seen it to be very effective.

If you want more info on Spiro check out Dr Sam Bunting's youtube - she has a specific video on it (plus lots of other helpful skincare advice for acne).

Marjpoops, I'm not in the UK so assuming Christmas has covered it. My gynecologist can prescribe it here, perhaps that's an option in the UK too? Or a private dermatologist if that's manageable. Should note, that if sexually active they don't tend to prescribe it without BC as well (doesn't need to be hormonal), same as with roaccutane.

Also would recommend Dr Dray's (US based dermatologist) video on Spironolactone alongside the Dr Sam one. Both very informative.

Many thanks Christmas and Botemps. Private is possible. I suffered so much with my skin that I'm prepared to live in beans on toast to ensure the girls don't have to go through the same nightmare!

Live ON beans on toast, living in them would be too much even for me!

Op I tried everything (including spironolactone) for about 10 years until I had roaccutane. First round did nothing, but they decided that I also had a skin infection, so second round plus antibiotics cleared it up forever.

It's been 25 years now, I get the occasional hormonal spot, but nothing like I had before. I still have PCOS and all the joy that brings, but my skin is good.

I'd try it, you've got nothing to lose.

@botemp think a gynaecologist could also prescribe spiro as acne is obviously a comorbity of PCOS and some associated symptoms.

@Marjpoops However I think a derm would be the best person to assess whether accutane or Spiro (Spiro better for PCOS type acne IME though) is the way to go. If you're in the UK there really is no need to live on beans to save to see a dermatologist (obviously go private if funds are plentiful), there are plenty of excellent NHS ones and a GP should refer. If they do not, refer them to the care pathway for your area (google acne and your hospital trust) and if they are difficult see another GP in the practice.

I too have PCOS and am thin. Not got all the symptoms but definitely got the acne. I went on a very low dose course a couple of years ago and it worked wonders. The spots are creeping back now and I’m going to ask to go back on it when I finish breast feeding my little one. Managing it with erythromycin, topical azelaic acid and clindamycin but it’s getting worse daily so soon I’m going to have to choose between stopping breastfeeding and clear skin. Sounds selfish but acne is absolutely confidence crushing and brings on very bad anxiety for me. I’d rather be happy and a better mum even if I have to give up breastfeeding earlier than I wanted.
I’d advise you to go for it. Ask for a lower dose over a longer time to lessen the side effects. They weren’t too bad for me, very dry lips being the worse. I was only on 20mg a day.
I hope my boys don’t inherit my horrendous skin :-(

In summary yes it worked well for me but hasn’t been a permenant cure but did offer some relief for a couple of years (alongside still using topical things)
The spots are back on my face but still haven’t come back on my neck, chest or back

The dryness is manageable on a low dose, and yes it gets back to normal afterwards. Lip balm junkie :)

For me, nothing else worked.

My daughter is the same, fortunately found a fantastic dermatologist who understood our family history. She has stunning skin at 14, has been on low dose for 18 months. It’s so different that my first experience of 4 months of my face literally falling iff!

Good luck x

Another one who has just finished a long and low course,..... I was prescribed 20mg for about 18 months for acne on my back/chest/neck and face. This is the 3rd time I've taken it, I'm 41. The lower dose meant very few side effects if any. It is the only thing that has been effective at dealing with my problem skin. The only side effect I've noticed that still lingers is I feel sweaty more - especially my upper lip and eyebrows!

But I will ask to go on it again if need be. It's a miracle drug for persistant and/or severe acne.

Another vote for roaccutane. I had suffered terribly for all my teens and my 20's. Wish I had done it years before. Used dermalogica products whilst on it and a different lipstick which helped and now 15 yrs later I get the odd spot which is sent packing by differin gel, prescribed originally by the dermatologist but I get a prescription from my gp once a year maybe less (never use it all but it goes out of date).

Good luck - I honestly never looked back x

Thanks for all your responses - really helpful! Not as scared about it now

Also, I found a recent 2018 study where patients were given omega 3 capsules alongside Roaccutane and results showed dryness was decreased compared to the control group. (Interesting for me as I already have eczema - and possibly helpful for anyone who is thinking of taking it soon)

Good luck. DD1 saw a dermatologist this week and it's roaccutane for her too. I've just read the Omega 3 paper and put in an order because her skin id generally dry with mild (usually) eczema, so thanks for that info @Candolim97

Roaccutane can be life changing. I too have PCOS and have found that at times when I can’t do anything hardcore, high dose B vitamins makes a huge difference. I usually go for a high dose B Vitamin combination, and extra B5 (pantothenic acid) if there isn’t already much in the combo...B6 is a bonus for improving PMT too; generally if my skin is bad my PMT is bad too.

I have acne and rosacea and have started treatment for demodex mites. The results have been good. My skin is so much clearer. I know it does depend on the causes of your acne but I'm persuaded that demodex mites are definitely an issue for many people. I'm currently using soolantra at night and it's made a big difference.

I’m not sure Spironolactone is commonly prescribed in the uk. I know it’s fairly routinely prescribed in the Us. However my dds private dermatologist says she doesn’t recommend it at all and prefers the Roaccutane route.

DD's dermatologist considered spironolactone, but as she has later onset acne and a strong family history (myself and her sister both needed roaccutane) he felt that as soon as she stopped any hormonal treatment the acne would recur. That's what happened to me when I stopped dianette at 40!

So roaccutane it is.