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Cystic acne - seeing a dermatologist

99 replies

PookieDo · 08/05/2017 17:47

Hi anyone in my boat? I don't know what to expect. I don't want to get my hopes up that there is any 'cure'. I don't even know what they can offer me.

I did roaccutane over 10 years ago which had great results but it was only a short remission and I've struggled for the last 7 years. I have scarring all down my back/neck and all over my face. I get large painful deep cysts. Sometimes the cysts go away by themselves sometimes they kind of explode when the skin is too stretched and there is no pus, just blood and clear fluid.

It is all hormonal acne. GP has now admitted I've tried everything possible I am either resistant or it's not working because it's hormonal. I cannot take the pill because I get migraine with aura so I am contraindicated.

I've written a list of everything I've tried and will take this along with me. Any other tips?

OP posts:
PookieDo · 05/06/2017 20:31

What are you talking about? I know what I have been prescribed.

Roaccutane aka isotretinoin

For which I have a long double sided info leaflet and also 3 a4 sides of paper print out from a Consultant Dermatologist.

If acupuncture was the cure for acne do you think people would still take this very expensive, relatively dangerous drug? I'm glad it worked for you but your advice isn't really what I am looking for so thanks.

Anyway I am only 5 days in so no real anything to report I don't think. Apart from I have noticed a slight memory fog - like it seems to take a little longer for my brain to catch up with its self. I'm really really tired gut that's anemia.

Skin not peeling yet significantly. Acne is so so. Lots of really really small spots which is unusual for me. Dunno if this is what they call THE PURGE

OP posts:
coldflange · 06/06/2017 15:55

I hope it's successful for you OP - and starts working quickly.

How long did it take the first time to clear your skin ?

PookieDo · 06/06/2017 17:06

Thanks!
I cannot remember to be honest. It wasn't very long. If you look at photos of me then I look almost angel like radiant. My face is almost perfect

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Atenco · 08/06/2017 02:39

I regret answer your question to the best of my ability and thinking only of your well-being. Take whatever you want, OP, I frankly couldn't give a damn.

RhythmAndStealth · 08/06/2017 03:34

Another one for whom cutting out dairy worked. I was totally dairy free for a couple of years. Now I have the odd bit of dairy now and then, usually cream or butter though, sometime ice cream. Try to make it organic.

I take probiotics and think this has helped my system cope with dairy.

The other thing that has really helped is cutting back on fruit and alcohol. It was explained to me as hormones, fructose and alcohol are all processed by the liver. Giving the liver less work to do with fructose and alcohol means it is better able to deal with excess hormones in the body.

Flowerdew2 · 08/06/2017 04:59

Hi, if your acne is hormonal then there is a very good chance the acne will return after accutane. The only real cure you can take for hormonal acne is the pill or spironolactone, and you would have to take them continuously to balance your hormones.

Spironolactone is really a safe drug at a low dose, safer than the pill and much, much safer than accutane. Spironolactone is used in the US for acne more than hypertension as it's really not that effective for hypertension, there are stronger drugs out there for that.

I would advise to do your research, and if you think spironolactone is for you, you can get it online from alldaychemist which is a reputable online pharmacy. Make sure to take your blood pressure regularly and have potassium blood tests (you can get them done at walk in clinics such as medichecks very quickly and easily), and start on a low dose and build up. It's a shame they don't prescribe it more freely in the UK because it's really the best option, along with the pill, for hormonal acne.

Again do your research but from what you've written spironolactone could be for you. I too have suffered from hormonal acne for years and have tried EVERYTHING, from vitex to estro block to Yasmin to saw palmetto.

PookieDo · 08/06/2017 06:59

No i am not going to buy drugs online it is not safe. You need to be monitored on spiro as it's a diuretic. It is dangerous to take unprescribed medication. I'm in the UK I cannot get random blood tests.

Can I just say that this 'support' goes the same way it always goes for anyone with acne, well meaning but this is exactly what I'm talking about in RL too - do you know how many people have told me to go on special diets, try herbal pills, use a particular brand of cosmetic/face wash/cream. I don't have a few spots I have a chronic skin inflammation/disease if you like.

I've tried many of those things. This is what I'm trying at the moment, this drug. I'm very frustrated to be told the drug I'm trying will not work for me. That's not really what I wanted to hear. The dermatologist seems to think it will work for me. If it doesn't I will go back and ask for more help.

I do know about the dairy link I'm aware it is credible and I did attempt it but I think my case is too bad to be cured by it - cutting out dairy is what I can do to try help prevent it coming back but I want to ask dermatologist what he thinks first

OP posts:
annandale · 08/06/2017 07:10

Really odd answers - and truly shocking re the ordering drugs online, though i guess there is probably one i would consider getting online if no other way.

Really hope the second course does the trick pookie.

PookieDo · 08/06/2017 07:11

Anyway on with the drug i am currently taking, am now 8 days in and my skin is weird. It's like all the oil is coming to the surface but at the same time it's peeling. Acne is pretty bad but I think this is to be expected. My nose is all peeling more than anywhere else

OP posts:
annandale · 08/06/2017 07:25

How have you been advised to wash? (Sorry no clue but watching ds's skin and interested)

hopsalong · 08/06/2017 07:36

Good luck with the second course of Roaccutane and sorry for some of the unhelpful comments on this thread. It sounds to me as if you didn't take Roaccutane at a high enough dose last time and I think you should be cautiously optimistic that it will work permanently this time.

I took it at 18 after five years of trying everything under the sun (like you) including multiple course of antibiotics (which have given me lifelong stomach / gut problems), a year on Dianette (which was also my first experience with clinical depression ---- and I sometimes wonder if it triggered it), various creams containing benzoyl peroxide (which burned my face a hideous streaky pink and white over the spots), and a million other topical products (including one like a small deodorant with zinc and antibiotics that worked better than most things but left a bizarre shiny tacky residue on my face).

Wish I had been offered Roaccutane earlier because my teens were completely sodded up by my acne. Remember my aunt coming round once and going to give me a kiss on the cheek and just sort of freezing as she looked at the weeping open skin and pustules. Amazingly from my 20s onwards I have often been told I have "naturally" good skin: if only!! Wishing you the VERY best of luck. I really think if you can tolerate the side effects and are willing to take a large enough dose for the right amount of time that it will work.

PS on moisturisers I recommend Cerave PM which you can get on Amazon.

dodgynoodles · 08/06/2017 07:44

I finished 6 months roaccutane in October last year. I had tried everything. Nothing worked like roaccutane, although I am getting small spots the CA has gone.

I have low iron and borderline cholesterol. So, this is what worked for me...

I took roaccutane in the morning with breakfast. Every morning I ate porridge (cholesterol lowering) with almonds and walnuts (you need adequate fats to aid absorption)

I took an iron supplement with my evening meal because it shouldn't be taken at the same time as roaccutane.

I stopped all alcohol for 6 months. I was really worried about the effects on my liver (although I don't drink that much anyway!)

I didn't like the 'heaviness' of cetaphil but I discovered Trilogy cream cleanser and moisturizer for sensitive skin which worked well. I used Lucas paw paw ointment on my lips and in my nostrils as they cracked really badly if not careful. I mean really really dry, like nothing I've ever experienced before, forget Vaseline or lypsil they're really not up to the job and it will drive you mad!!

I was very aware of my mental health and although I felt a bit 'flat' while I was taking it nothing compares with the feeling of getting rid of the CA!!

Good luck. I don't think anyone understands just how distressing it can be unless you have dealt with it yourself. Oh and I'm 46 and I had tried literally everything else!

dodgynoodles · 08/06/2017 07:57

oh and I also got a fair bit of joint pain. I had to stop running and even swimming was painful in my shoulders but this literally disappeared after 6 weeks of stopping and I don't regret it at all. My dose was 0.8mg/kg (1mg/kg is the upper limit) Good luck

PookieDo · 08/06/2017 11:01

thanks yeah I read about joint pain and yes - I did clearly not get the 10,000mg needed in my body the first time hence the possible reason it failed. It wasn't even my notes what my titration was!

Currently I am 20mg moving to 40mg after 2 weeks, which would make me just under 0.5mg per kg so when I see him in August either I will have to go up to 50 (if they do it in 10's) or 60mg to put me at about 0.7/8 per kg - I am 86kg.

If I stay low then it will have to be long to reach the 10,000mg, although I would like it over sooner rather than later this is a tolerance issue and I agree with the 20mg staggered jumps to see how I manage

Cetaphil today has left me like a shiny barbie doll! My make up and skin at least isn't flaking off onto my keyboard. Yet!
My itchy scalp is driving me bonkers

OP posts:
Mamabear12 · 08/06/2017 11:17

Many people do not believe this, but I believe some people are sensitive to foods and can cause acne. The problem is, it is not just one food and it can be several things. It is so difficult to pinpoint and seriously drove me nuts trying to figure it out. It took me about 2-3 years to figure out what caused me to break out. I would get cystic acne, painful ones. At its worst, I was getting a new painful pimple every day, which would take 2-3 months to heal!! So my face was covered and my back! Then I had a thought to when my skin was actually relatively clear in high school and when I started getting problems with my skin around age 18. What changed? Well, I started eating a lot more junk food, eating breakfast etc. From when I was little I never felt hungry for breakfast so I never ate it, which probable gave my body more time to heal etc. In addition to more junk food, I was eating other additional healthy food. But it was actually the healthy foods that caused me to break out! I can eat McDonalds just fine. But figure out avocados and dark chocolate caused painful pimples around my mouth. Most nuts cause painful acne on my back. Flaxseed oil, causes acne all over my face. Too much soy and rice milk causes acne on my chest. I don't have a problem with dairy, as some people do. I thought I might so I tried alternatives, only to realise they gave me reactions elsewhere. Too much sugars also effect me. But once in a while its fine. Anyways, so after years of trying to figure it out. I found those to be my main culprits. I cut them out and my skin is completely CLEAR. Sometimes I get relaxed about it and eat some avocados bc I love how they taste and after a few days of eating them sure enough painful pimples appear. I am fine to eat an avocado once a month with out reaction, but if I eat it once a day a few times a week I break out. I learned that the flaxseeds and flaxseed oil breaks me out by accident. I was eating it to be healthy and my skin was at its worst. Then I went to visit my sister and brought the flaxseeds and forgot them at her house. Well, after a few weeks of not eating them my skin got a bit better and I was on the phone w my sister, who complained about breaking out like crazy all of a sudden and then she said she was eating some cereal w flaxseeds that I left at her place and it was like bell went off, I realised that was once cause and told her. She stopped eating it and cleared up. Then after that I decided to pay attention to my diet. It took a long time to figure it out, because acne is a delayed reaction when you eat something you are sensitive to. Problem is it can take a day or more to show up. Or you can eat a little and be fine, but if you go over a limit you break out. It took years to figure out. I figured it out around age 24 and now I am 34. I am clear most of the time, but to this day, if I eat nuts I break out on my back, if I eat the other foods I break out on my face. I usually avoid them, but sometimes I will eat them and bam...break outs. It was life changing for me, bc acne was making me depressed. It was so frustrating bc even when I would change my diet to help improve my acne, I would accidentally add something new like soy, flaxseeds etc which would cause more acne!

Everyone is different, try watching what you eat and learning what causes it. Most people do not want to believe this, as it is not easy to figure it out and they don't want to restrict diet. For example some people get break out from drinking soda, but don't want to stop their 1-2 cans a day they drink. Or you can be eating something which is meant to be healthy, but it breaks you out, so you have no clue, because its supposed to be good for the skin, like flaxseeds.

PookieDo · 08/06/2017 11:53

It is not that I don't want to believe it but that kind of trial and error is completely bonkers to me - i cannot afford this level of dietary scrutiny what with having a hectic full time job, 2 teenage kids, a house to run etc.
I am a person who over produces sebum. I have large pores. I'm really hairy (even face). These pores constantly get clogged and inflamed. It's a medical problem which may possibly be linked to my diet but over the course of 10 years, it is only antibiotics which have made a difference, but they have now destroyed my gut bacteria.

I've tried losing weight re clean and lean diet. It doesn't help my skin.
I gave up alcohol. It doesn't help my skin.
I gave up dairy and it didn't help my skin and was very hard and very confusing and according to GP, completely unnecessary without an allergy and hightens the risk of osteoporosis. Soya/almond products are disgusting (to me) so it was really difficult.
I can't take the combined pill as I get migraines with aura.

The only thing that both medical professionals in my life agree on that I am stuck with this until I go into the menopause so roaccutane hopefully will give me at least a good few years respite of this condition - and I'm hoping that when it is under control I can then mess about with my diet and see if there are any triggers - I can't do this when it's constantly this bad.
By blocking my sebum production with roaccutane all I can hope is that this will work

OP posts:
dodgynoodles · 08/06/2017 16:15

I wouldn't describe any of my acne as 'pimples' I had nodular cystic acne which was diagnosed by a Dermatologist. I had tried everything. From skin care regimes to antibiotics. I followed a vegan diet for a while. The only thing which finally worked for me was roaccutane.

If you believe limiting some food groups in your diet can help I really don't think you understand the problem.

PookieDo · 08/06/2017 17:02

Yes these are not spots with a bit of pus in them. Those can usually be cleared by reducing bacteria. These are inflamed lumps (sometimes grow as large as a pound coin) full of blood and sebum. The clear yellow fluid you get when something is inflamed but trying to heal that leaks out. And you get 5 or 6 of them at a time and they take weeks to heal. Bruise and scar your skin. Then just inflame again a few weeks later.

To get the inflammation out you have to unblock all the pores. Stop your skin producing so much sebum (oil) and let it heal.

Stopping dairy is good for when you suffer with monthly spots I do think - because it reduces oestrogen levels.

OP posts:
Mamabear12 · 08/06/2017 20:51

If you read my post, I state that dairy is not a problem for me. I can eat all the dairy I want. I understand many don't want to look at their diet because it is very difficult. It took me 2-3 years to figure out all the foods. Just try and pay attention. In fact for me the healthier I ate, the worse my skin became bc I added things that made me get acne. Like nuts, avocado, so and rice milk. My acne was painful cystic ones that would take months to heal. At 18 after I started breaking out I went in roaccutane, which only cleared me a year. Then I went on antibiotics for a year, which cleared me...but acne came back whenever I stopped. I had to choose a different path other then medicine bc I knew the side effects wand what it was doing to my body was prob very bad. I also have oily skin and need to wax mustach and pluck hairs from my chin, thanks to my dad who is hairy! But I promise you once I figured out the foodmculprits my skin cleared 100 and anyone who sees my skin now would never believe how bad my acne as years ago. And I can bring this acne back the second I eat the danger foods for me. I ate avocados and dark chocolate a few times this week and already have a painful pimple on my chin and one on my cheek. So now I'll stay away from those foods a while. Usually it's the foods you love that you are sensitive to. So annoying bc I sure do love avocados! And btw I'm a mom of a 3.5 and 5 year old who keeps me very busy, but I can still pay attention to what I eat ;)

Mamabear12 · 08/06/2017 20:57

I forgot to add, that if I continue eating the foods that break me out, my face would be covered in acne. But of course I stop, the second a pimple or two returns. And I stay away for several weeks or months until I almost forget bc my skin is so clear for a while....it's almost like I forget I get acne from the foods. Then I indulge a bit and bam, a spot. It was the hardest for me to figure out what I was eating. It was trial and error and made me so depressed. Bc I was already thin and bc u don't see much results at first bc when u stop eating he culprits ur pimples r there for weeks bc the painful acne takes forever to heal. So it was depressing and very hard indeed. But thank goodness I figured it out.

PookieDo · 08/06/2017 21:52

My scalp is so dry and itchy it is driving me completely bonkers

OP posts:
dodgynoodles · 08/06/2017 22:21

Well done. I'm glad you sorted out your problem skin. Steer clear of those avocados and flax seeds!

BetterEatCheese · 08/06/2017 22:29

Have you tried sulphur products? My friend has cystic acne and it has worked so well

PookieDo · 09/06/2017 07:45

What kind of sulphur products?
I need some kind of scalp treatment because i scratched it so much it's bleeding
I put Tgel and coconut oil on it but this hasn't helped

OP posts:
PookieDo · 09/06/2017 07:45

What kind of sulphur products?
I need some kind of scalp treatment because i scratched it so much it's bleeding
I put Tgel and coconut oil on it but this hasn't helped

OP posts:
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