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Original poster

PCOS acne. Roaccutane didn’t work. Ideas?

67 replies

minipie · 30/01/2021 22:36

I’ve had acne since my early teens. I’m now 40 and beyond fed up of it. Tried over the years:

Zineryt
Duac / Epiduo
Laser
Roaccutane - twice (via private dermatologist)
Dianette
Yasmin
DIM supplement
Spironolactone
Probably some other stuff I’ve forgotten

Some had no noticeable effect. Others - Duac, Roaccutane, Dianette, Spironolactone, DIM maybe - produce an improvement, but never fully clear.

Do any fellow sufferers (or ex sufferers!) have ideas on where to go from here? I can throw money at it if needed. If suggesting a dermatologist - any specific names would be most welcome.

Thank you ....

OP posts:
Twinkle71 · 30/01/2021 22:54

No idea but I feel your pain. I am 50 and still suffering and have tried all of the above. I have had a hysterectomy so it’s not hormonal flares . I have been on spironolactone for a year and it’s kept it at bay but my skin is horribly marked . Also tried all of the eliminating diets out there to no avail. So I am interested if anyone has the answer too!

Original poster
minipie · 30/01/2021 23:01

Ah Twinkle sorry to hear you have the same. I haven’t tried elimination diets except no dairy which didn’t work.

OP posts:
Nogardenersworld · 31/01/2021 01:00

I have the same issue, accutane did work for me but only whilst I was on it, 6 months after I came off it the problems started again. I also have lasting damage from it so I don’t want to take it again.

I have been following Caroline Hirons skin care book and I have found that though I’m getting flare ups, they’re not as bad, not as sore, the skin around is fine and so other than when I was on accutane my skins the best it’s been since I was 10.
It’s not perfect but I’ve found it helps

Following with interest for other posters advice though

SweatyBetty20 · 31/01/2021 01:03

I had it bad but no wheat and no dairy worked for me. Hitting perimenopause has probably helped the most though - even if it has turned me into a hysterical lunatic at times.

ErrolTheDragon · 31/01/2021 01:08

Mine wasn't too bad when I was on Marvelon, which I took pretty much up to menopause ... I've not really had acne since then though I have had rosacea (not too bad at the moment for some reason).

Titsywoo · 31/01/2021 01:21

How long did you use all the things you have listed before you gave up and tried something else? I only ask as my dd had terrible acne and refused roaccutane as she can't swallow pills. We went for differin and it made her skin break out worse than I had ever seen. Her cheeks were just a mass of spots. This lasted for 10 weeks and she was about to give up but said she would give it 2 more weeks and a week later it started to go. Now after 4 months her skin is clear. She has some pigmentation left from all the acne but that is fading. I'm glad she gave it a good amount of time to work as it has been quite miraculous! I bet a lot of people have not been able to cope with the big breakout and given up though!

TastyMcNameChange · 31/01/2021 01:21

I’ve been on roaccutane twice too and I’m still spotty in my forties, including on my body. I hate it and can’t wait for menopause. I find these things work best for me:
Avoiding lots of meals or snacks high in carbohydrates or sugar that spike my blood sugar.
Benzoyl peroxide 10 (altho this seems to be disappearing and only weaker strengths are available now).
Acupuncture

polkadotpixie · 31/01/2021 01:21

What about Metformin? Maybe if your PCOS was controlled by it, your skin may improve as a result

TastyMcNameChange · 31/01/2021 01:22

What is sporinolactone and DIM please and where can I access them?

Fluffycloudland77 · 31/01/2021 08:13

What dose of roaccutane did they try?.

Fluffycloudland77 · 31/01/2021 09:04

You could have a phenol and croton peel. It’s done under sedation and it’s got a long downtime but phenol is highly antibacterial and gets rid of scarring too. It’s the deepest peel you can have.

Original poster
minipie · 31/01/2021 09:19

Ah thanks so much for all the responses! Working through them!

OP posts:
Original poster
minipie · 31/01/2021 09:35

@TastyMcNameChange Spironolactone is available on prescription only. I think GPs can prescribe but some may prefer to refer to a dermatologist for it. It’s mainly used as a diuretic but by chance was found to help with hormonal acne too. Very few side effects unlike eg Roaccutane.

DIM is a natural supplement, in essence it’s concentrated broccoli Grin You can get it online from some vitamin suppliers, I get mine from Nutri Advanced.

I haven’t tried Metformin, my PCOS has never caused me weight issues so it hasn’t been suggested. I didn’t know it was helpful for acne?

@Fluffycloudland77
Roaccutane - I was on 30mg then 40mg for around a year in total, I think. I’m quite small. Didn’t have terrible side effects, slightly dry lips. Also took it alongside Spironolactone for a while. This was all about 4/5 years ago and the derm was bemused why it wasn’t working. I also took it in my teens (much worse side effects then) and had the same result ie improvement but not clear.

I will look into that peel. My skin is so unreactive, I feel like it needs something nuclear!!

@Titsywoo I have tried them all for a long time, promise! In general the problem is that I just don’t react to stuff - rather than it making my skin worse - at least if it did that I’d feel maybe there was a purging effect and it would clear up after that was over? I haven’t tried Differin, guessing that is an antibiotic?

Caroline Hirons - I will look at. I have to admit I haven’t tried any complicated skincare regimes because I don’t believe they will work (and dermatologists have said they won’t) as my acne is hormonal. But maybe I should try.

Coming off wheat is an interesting suggestion and something I have considered for other reasons. I had gestational diabetes in pregnancy and although that’s gone I definitely do better on a low carb/low GI diet.

Marvelon I have never tried, but was told by the derm and GP I needed to avoid “normal” hormonal contraception and stick to Dianette or Yasmin

OP posts:
Original poster
minipie · 31/01/2021 09:36

Oh and acupuncture! Really? I’ve had it when TTC but had no idea it could help acne. Off the cards right now anyway...

OP posts:
QuentinInQuarantino · 31/01/2021 09:39

Have you tried antibiotics? (Sorry I don’t know whether any of the drugs you have mentioned that I don’t recognize are antibiotics) - they help with mine when it flares up. The one I get is called “proderma.”

Keep on at the gp and make sure they understand it isn’t a vanity issue, I had a couple of dismissive doctors before Iodine one who “understood.”

GoldGreen · 31/01/2021 09:39

@minipie where are you in the country regarding recommendations for a dermatologist?

TheVolturi · 31/01/2021 09:43

I had this problem when I was younger (I also have pcos) and the only thing that worked for me was Benzoyl Peroxide which the Dr prescribed.

Fluffycloudland77 · 31/01/2021 09:45

Did you eat enough fat while taking it? I work with a girl who’s had accutane and only got slightly dry lips. It didn’t work for her but I took mine with dinner because that’s my fattiest meal and my lips were unbearably dry.

Original poster
minipie · 31/01/2021 13:06

QuentininQuarantino I haven’t tried antibiotics in a long time - and only topical not oral. TBH I wanted to avoid them as I’ve a tendency to fungal/thrush type stuff as it is.

@Fluffycloudland77 I eat a lot of fat 😆 cheese, salami, butter, avocado, meat... in fact I came up as having high cholesterol while I was on it. So don’t think that could be the issue...

OP posts:
Original poster
minipie · 31/01/2021 13:08

GoldGreen I’m in London

Benzoyl peroxide does help, just not more than about 50% improvement... but better than nothing

OP posts:
RuggeryBuggery · 31/01/2021 13:12

This is my fear a bit - I’m 3/4 way through a 4 month course of roaccutane (could be 6 mos if needed), was so hoping it would be a miracle drug for me. It has improved things but am still getting some new spots. Side effects haven’t been intolerable but definitely noticeable and unpleasant. Can’t bear to think it’s been for nothing after such high hopes.
My derm did say that having side effects seems to be proportionate to how well it works. If you see what I mean. So people that don’t have many it may not be as effective for.

Chihuahuacat · 31/01/2021 13:12

I’ve heard spearmint tea and inositol good for PCOS. Both easy to take so worth a shot!

Marvelon also helped me.

RuggeryBuggery · 31/01/2021 13:13

I also find it really hard to understand why they said the dryness in your lips, nose, hair etc will be temporary but the effect on your skin should be permanent/long lasting. I don’t get it 🤔

Original poster
minipie · 31/01/2021 13:30

RuggeryBuggery I think it works for a huge huge proportion of people - that’s why the dermatologist was so bemused by me. So hopefully you’ll be in the great majority!

Chihuahuacat Spearmint tea I do have sometimes, was having it every day for a while, no noticeable effect sadly

Inositol I have sitting unopened in my cupboard actually! Should give that a go.

@ErrolTheDragon and @Chihuahuacat - you have said Marvelon helped. Do you have PCOS ? I’m wondering whether a different hormonal profile points to different Pills

OP posts:
Fluffycloudland77 · 31/01/2021 13:35

Your nose isn’t colonised by the acne bacteria @RuggeryBuggery. The depletion in oil albeit temporarily kills the bacteria.