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10 years on acne.org and still battling

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1
(@english_rose)

Posted : 07/11/2019 1:14 am

It's 10 years since I joined acne.org. My history iswell documented on these boards but here I am again, just hours away from a private,eye wateringly expensive, dermatologist appointment that I am pinning all my hopes on.

I'm female, age 42, weight 57kg, in England.

I've battled acne for OVER 30 years. Amongst all the other "remedies" and "cures" from antibiotics, birth control, topicals and all sorts of other wierd and wonderful things I've tried,I've also had 4 rounds of accutane; in 1990, 2010, 2011, 2013.

I'm seeing a different dermatologist this time, I've chosen to travel further afield to see this doctor who has a super reputation and is highly regardedfor his work with patients suffering this condition. Acneimpacts on pretty much every area of my life and after 30 years I'mnot sure what else can be done for me but I live in hope...

Sibel liked
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32
(@foodforthought)

Posted : 07/11/2019 11:57 am

Good luck English Rose! Let us know how it goes.

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81
(@aussie-scientist)

Posted : 07/11/2019 10:03 pm

English Rose

You most likely now have fungal acne, not ordinary acne.

Fungal acne is caused by taking antibiotics and other meds, possibly including accutane. treatments for ordinary acne make fungal acne worse and worse.

I STRONGLY suggest you do the following -

1. Buy clotrimazole topical antifungal cream (often sold as Canesten - no prescription needed) and apply it to the areas with the acne 2-3 times a day. Topical antifungal creams are totally safe.

2. Wash your hair in an antidandruff shampoo.

3. Do NOT apply any moisturisers or organic oils to the areas with the acne. Keep your skin very dry. Wipe off sweat. Fungus loves moisture. And one type of fungus that causes acne FEEDS on organic oils.

4. Do NOT exfoliate your skin.

5. Do NOT take antibiotics unless you have a life threatening or near-life threatening bacterial infection that cannot be controlled with topical treatments.

Do you have dandruff or a white tongue ? Which antibiotics have you taken ?

Have you taken other meds - if so, which ones ?

You might have gram negative bacterial acne (also caused by taking antibiotics) or demodex mites acne, rather than fungal acne, but fungal acne is the most likely. I can provide information about how to treat these, if necessary.

Doctors know nothing about fungal acne, and usually they know nothing about gram negative bacterial acne or demodex mites acne - they keep treating these types of acne as though they are ordinary acne, and the acne gets worse and worse - not surprisingly.

I am happy to hear back from you.

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1
(@english_rose)

Posted : 07/19/2019 5:59 pm

Well an interesting reply from Aussie Scientist - you say doctors know nothing about fungal acne? The derm I saw last week has prescribed Nizoral shampoo to be used on my hair and face twice a week as part of his treatment plan.

I'd like to point out that my acne is not getting worse and worse; it's improved with each round ofAccutane but I'm not clear, so with respect,I'll be following the advice of my qualified, experienced dermatologist who hasaccess to my full medical history andhas carried out a lengthy consultation and full examination of my skin.

I was impressed with the derm, he has diagnosed acne and folliculitis. I've hadswabs done ofvarious parts of my body to check for fungal infections and Staph Aureus.

I've started my treatment under his care and will see him again in 6 weeks, as a private patient and after that pointI'll be swapped over to his NHS list, which is whenhe will also carry out allergy testing.

Treatment plan, started today:

Rifampicin (orally) 300mg, twice a day, for 12 weeks

Clindamycin (orally) 300mg, twice a day, for 12 weeks

Bacroban nasal ointment to be used twice a day, for 10days

Niizoral shampoo for hair/scalp AND face, twice a week

Terbinafine 250mg a day orally

Terbinafine Hydrochloride cream

Pimecrolimus cream

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7
(@podo)

Posted : 07/20/2019 10:10 pm

I hope you have good results with your treatment! Your new dermatologist sounds very capable... I have never (literally not even once) had a dermatologist take a swab of my skin to actually scientifically determine on a microscopic level what is out of balance in my skin microbiome... or even have a close look at my skin. I always got the feeling that the doctors were just sort of amused and grossed out by me.

Then again I live in a really small rural town so I guess it's hard to expect much from the doctors here (all elderly gentlemen who are so quick to tell me that my skin condition is "genetic" and "incurable", and that I somehow should to pay for their treatment - pills and creams of all kinds... despite my condition being incurable. Hmm)

Once had a dermatologist who literally didn't even look at me in the office, no eye contact, nothing. Even when talking to me his eyes were constantly glued to his computer screen. At the time I felt certain it was because he thought I was gross. (I was 18, and super self conscious lol!) In hindsight I think he was just bored and uninterested with his job?His office always seemed busy -waiting room always full of clients (interestingly I don't recall ever seeing anyone there with acne though - they had other skin conditions I guess...).Who knows!

Bygones haha. For now I'm also using antifungal cream (terbinafine cream, bifonazole cream and some antidandruff shampoo - couldn't find Nizoral but I found something in my local store which is supposed to target the fungus that triggers dandruff - and acne in those who are acne prone)... I seem to be clearing a little but I can't be sure yet as it's only been 4 days. The most remarkable change is that I don't itch on my chin anymore. Which is fabulous! I still get oily and have bumps (comedones that are not inflamed - although they are unsightly they are neither painful nor itchy at least!) but for now there are no active cysts. Just the small comedones and a lot of scarring...

 

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81
(@aussie-scientist)

Posted : 07/20/2019 10:19 pm

Goodish news, Podo. Thanks

Good news English Rose

I wish you well.

 

 

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2
(@stillacne)

Posted : 07/23/2019 11:07 pm

Good luck English_Rose,

I am in similar age bracket. Also suffering acne for decades.

I hope you have a great result with treatment plan.

Just to give you my story:I have to admit that it was never very severe, but it's still every now and then. I wish I was prescribed roaccutane back in my teens (90s). Anyhow, I only had super-low dosage 5mg / day few years back. Good results afterwards. Except few months ago, I had the worst acne of my life (worse than my teens or 20s). Back to dermatologist and having roaccutane again.I can tell you that I was extremely depressed (due to acne breaking out, not roaccutane). And I depression was gone after taking roaccutane.

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(@english_rose)

Posted : 07/24/2019 4:05 pm

Hi Podo, I'm sorry to hear you've not had great experiences with derms. My experiences have been positive, it's just that I've not had the results I'd hoped for. I've always found the consultants to be great; the GPs generally less helpful.

I wish you luck with your treatment, it would be great to hear how you get on.

Hi stillacne, I wish you luck with your Roaccutane course, although it didn't completely cure me I do still think it is a brilliant medication - it DID clear my back, shoulders and chest. It also improved my facial acne. I'd highly recommend Roaccutane to anyone considering it.

Acne affects so much of every day life and mental well being, I think this is still sadly not understood by some doctors.

I hope that one day there will be a permanent cure for this condition, though for me it will be too late -I've passed up on so many opportunities in the last 30 years because of how I look/how I feel about how I look, I can't get those 30 years back, I just have to hope that I'll get clear and can enjoy my mid life and pension years acne free hahaha!

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0
(@enormouslyric)

Posted : 07/28/2019 10:30 am

Hi,

I'm the same age as your Rose and I've been fighting with acne for a long time. For a month I have an outbreak greater than ever. I have taken roacuttan 20 years ago and I have always refused to repeat it because they gave me many side effects. After visiting some prestigious dermatologists and reading on the subject I decided to take it again although it scares me a little. I hope it improves and put an end to this. I know that I will never have a clear skin at all but above all that does not condition my life.

Good luck for your treatment

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(@rosewaters)

Posted : 08/07/2019 1:11 pm

Hi English_Rose!

I ran across your post today, and words cannot convey how much I sympathize with you. I'm a 46 year old female that has battled acne for almost 34 years. My skin is more oily now than when I was a teenager which completely baffles me. It has changed my life far more as an adult because of the embarrassment. I find myself depressed and frustrated to the point of where I will just crawl back into bed. I love exercising and working out, but when I go to the gym, it seems I'm the only one with acne. I see all of these other people sweating, and their skin is flawless. To top it off, a couple of years ago I started getting patches of acne rosacea. I have a good dermatologist that's very sensitive and understanding. However, he doesn't really know what else to give me but Accutane which I've been on for so many years I stopped counting. I basically take it as maintenance 10mg once a week. I have horrible side effects from taking that one pill ~ migraines, severe hot flashes, joint pain - the list goes on. I wonder what harm I'm doing to my body, but what else do I do? I can cry every day or suffer through the side effects to just feel like a half way normal person. I wonder when my time will be up from having to deal with this horrible disease. After 34 years, I feel I deserve a break. Sorry for sounding selfish. A friend wants me to try Rodan & Fields Unblemish acne regimen for adults. Another expensive face treatment that may or may not work. I've tried EVERYTHING as I'm sure you can relate. My dermatologist says this could last into my 50"s. I don't know if I can last that long battling this monster. I'm taking a summer vacation which I dread because I have to get up early to deal with my skin and fight it again in the evening. Anyway, I guess I needed to vent. My thoughts and prayers are with you, and I hope you find clear skin in your future very soon. All the best....

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50
(@sibel)

Posted : 01/06/2020 7:11 pm

Dear English_Rose, stillacne, rosewaters,

..when I read your posts just could not believe it ...it is my story 100%.. I have been fightingwith acne for around 28years, I am 46 now. It has changed my life completely, stole the best years and now I am sitting with new big outbrake on my scalp/chest/face. I had 5 courses of roaccutane in different variations from 30 to 38, it had clear my chest, back and shoulders after the 1st course....had short courses for these 7 years(10 mg for a month then 5 mg for a month and keeping 5 mg twice a week for a month) and now started again for the 6th time...

..I developed scalp acne/Folliculitis around 5 years ago(read that it could be the aside effects of roa) and for the last 6 m it has been permanent severe inflammations leaving the new scars on my face...I have been doing diff scars treatmentsduring these 7 years but did not get any result or minimum with Subcision+filler...

I also tried everything possible for all my lifetime... nothing helped except roa... and even roa brings only temporal effect..while you take it dries your pores when you stop the pores slowly come back to their genetic stage and the infection starts to grow again...

...saying that I consider Roa to be my Saver! And the only drug which brought me back to half life at 30 after young years of suffering....allthese years and I was severely depressed Before Roa and never on Roa.. I read now that they want to dismiss roa in the UK because it can cause suicidalthoughts and several teenager have committed suicidewhile on roa.. which sounds strange and for everreason directed against Roche..I highlyrecommend Roa to anyone with this debilitating condition.

I also wonder what harm roa does to my body...I do have aside effects like permanent dry eyes even without roa, hair loss while on roa...but living with acne is so much more worse...I understand on this point that not a single Dermatolog could help. Theaetiologyof acne and acneform disiases is unknown. They just Do Not Know! There are antibiotics, antiandrogens and retinoids to suppressthe symptoms. And no cure...

I took many diff antibiotics which did not help.. English_Rose The dosage prescribed is like 1200mg ofantibiotics every day for 3!months! And plus antifungal..Did your Dr say what about you liver and other organs? How wouldyou tolerate such a quantity of the drugs? It will effect your stomach and microbiota...I was sickafter 3weeks being on tetracycline and Clindamycin but did it for 2 months with no success in the end...there are less hard but not less effective antibiotics like macrolids, I took Azithromycin and repeat it now.There are different schemes depending on severity. I take 3 pills 500mg eachfor the first 3 days of the week and then 500mg once a week for 12 weeks. The next level 3 pills every 10days for 12 weeks, the next is 3 pills every week for 12 to 18 weeks. I read here that one guy took Azithromycin 6 pills for 3 days(double dose) and repeated 3 days 3 pills for the next week and he has been clear for 2 months...

I wish you luck with your treatments and please write how are things go!

..Even if it will be a cure in next 10-20 years for me it does not matter already so much..my best years are gone in this battle..

..I should say that I tried everything Aussie suggested.. unfortunately he stopped answering tome after I saidI was suspected for vasculitis(luckily was not confirmed).I think that Candida plays a significant role in acne but it is not the only reason.. maybe I tried not enough(close to 2 months) or also you need to take oral fluconazol as well..

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1
(@pudding-pie)

Posted : 02/05/2020 2:36 pm

Have any of you tried washing with nothing but electrolyte water?

You or may not have heard but electrolytes are the big thing in skincare this year.

My skin is looking pretty clear these days simply by washing my face with just tap water and my hands in the morning. Then at night the same routine but with electrolyte water. Easy to make, just buy a 5 litre bottle of distilled water, add some scoops of electrolyte powder, shake it up and pour a little in the sink to wash in.

Electrolyte water is extremely stimulating to cells and allows your skin to naturally moisterise and balance itself.

 

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