To order "illegal" acne pharmaceuticals online

[QueenCamilla]

Now, I don't suggest anyone goes and tries to find the medication online.
I'm more bewildered that I had to take the matters into my own hands after doctors not taking anything relating to my adult hormonal acne seriously.

I'm also upset how long I had to suffer this issue when there was suitable medication available all along.

I'm talking about Spironolactone - a mild diuretic with anti-androgen properties that is cheap and prescribed on the NHS as a "water pill".

The drug has a long history and very low incidence of side-effects. It's use off-label to treat acne in women is also documented and effective.
Some of the side-effects in men used to be undesirable but these days... 🙄

I've had acne & often backne since early puberty. It affected me mentally. I spent way too much time hiding behind the makeup and I spent way too much money on creams, lotions, supplements - prescribed and not.
I've been on the pill since 14 with the pregnancy the only break.
I used awful chemicals with terrifying side-effects (Accutane, looking at you). Cause it's normal to prescribe something toxic that makes you bleed from your anus... 😕
Accutane only worked whilst in my system, then back to spots.

I read about Spironolactone. GP would not prescribe "off label". Private dermatologist would be this drawn out, expensive process with specific blood tests and monthly appointments.
I just couldn't sink in more money on yet another little known about "cure" that might or might not work for me.

So I ordered it online. From some country where Spironolactone is prescription free. And it helped! I'm totally, completely acne free for the past year. All of it is gone I get complinents about my skin often - the best of both worlds - skin that is not dry and spot free. Zero side effects. I don't even pee more than usual.

But here I am, feeling like a criminal, importing drugs from abroad in jiffy bags, texting to some burner phones (maybe I need one? 😁), taking a risk with what I'm taking. I'm actually more worried about losing my "dealer" and my clear skin!

Is anyone on Spironolactone prescription from their GP?
How did you get there?
If you take it via private - how much a month does it end up costing?
Should I own up to my GP and see if they prescribe it to me now that I'm sure it works?
Why is this use of the drug not "on label"? Probably something to do with the poor mens not being included.

Thank you! I have a new GP I'm seeing in a few days. I'll fess up and I also say I know someone (you!) who is getting it prescribed via NHS for acne.
It's probably the usual Postcode Lottery at work here.

I dunno what they'll do with me as I'm on the meds already. Tbf, I won't quit until I get prescribed, so they'll arrest me, section me or comply 😂

The WHO estimates that 50% of drugs sold on the internet are counterfeit. If you are lucky it will "just" be aspirin or chalk . If you are not lucky something worse.
Of the internet medications that are genuine many are not the correct dosage, many are out of date.
When you buy medications off the internet with no prescription you are buying from people who know they are breaking the law . They are knowingly breaking laws put in for patient safety . You are trusting people who put profit above safety with your health. You are trusting that they will handle and dispense safely medications which could kill you.
Medicines which, normally , have the double safety measures of a qualified practitioner and qualified pharmacist checking both the prescription and medication dispensed.
At best you are playing Russian roulette with criminals hoping you get the medication you have asked for.

There’s probably nothing else that can be offered to a male child with acne other than roaccutane though?

If you’ve progressed from a good skin care regime to antibiotics to antibiotics and topicals there’s nothing left, I don’t think.

girls have the option of an anti androgen OCP but the dermatologist we saw said she only prescribed it if periods were also problematic, and I wouldn’t have pursued it with my 14 year old as I thought she still had a little bit of height to come.

The reason medication will not be on label is because the trials to pass a medication as safe are immensely expensive . If a drug has been developed for one problem and is no longer under licence ie patented to a company they cannot make the profit that will pay for the trials to see if it is safe to use for another problem . The only way for the drug to get licensed then would be for a government or charity to pay for the drugs trials .
Just because a drug is safe for problem A does not mean it is safe for problem B and new clinical trials need to be carried out.

Of the internet medications that are genuine many are not the correct dosage, many are out of date.

Yep, mine are very close to their end date.
I sometimes wonder if other buyers are women like me unable to afford a private dermatologist, or is it men transitioning.

I really rather not take the risks! But I'm equally worried about not getting access to the medication that has changed my life.
I think (hope) that the NHS will prescribe it this time to save myself from myself if nothing else.

@Menora Thankyou, I went to the doctor who prescribed something that I've been scared to test as apparently it makes skin spotless but old and dry!

@Lollygaggle that makes sense. There is currently underway the biggest trial ever on the use of Spironolactone in treating acne. The study will look at the efficacy, safety (already established just on a bigger scale this time) and if the first two criteria meet the requirement, then also the cost implications for the NHS (though study is carried out in the US, so not sure how that relates if at all to the UK).

It's expected to be safer and more cost-effective alternative to Accutane in women.

Once again, not sure if the outcome of the study will change anything at all for us in the United Kingdom. Hopefully.

I am on Spironolactone via private dermatologist (mainly for acne but I do have PCOS).

The regular blood tests are there for a reason. I used to be prescribed sleeping pills but didn't mention them when the dermatologist asked about other medication, as at that point I hadn't had a prescription for nearly a year. I still had one or two in my bedside drawer, and it just so happened that I couldn't sleep the night before my blood tests, so I took one for the first time in forever. As soon as the blood test results were back, I got a concerned call from my dermatologist saying the levels were completely off.

We realised it had to be the sleeping pill - it was fine as a one-off but would've been dangerous had I not known and continued with both. So based on that experience, it's not something I'd want to take without medical supervision.

My dermatologist even warned me off eating too many bananas because of the potassium - if the drug is strong enough for bananas to be a risk factor, that kind of puts it in perspective...

That said I completely get how difficult it is with the acne.

Along with the Isotretinoin tablets he gets Dermol lotion as a face wash and moisterisor and Epiderm ointment for the dryness. It has been an amazing transformation for him.

@nolongersurprised

I think it's the right thing to keep your daughter off anti-androgens for a while. The height and also the adipose tissue vs muscle mass development. Her body might find own balance yet.

Is she on the pill? If the problem persists in another year that's where I'd start. It did help me a good 30% and the contraception was a piece of mind.

@leakinthesink

How often are your bloods monitored?
How much does it cost you a month?
Where do you get them taken and do you live in a large city?

What were the results on acne for you?

#Questiontime 😂

It was the Doxycycline , Erythromycin and topicals through the Gp the he tried first. We went back to the gp each time we realised the antibiotics were not working. He was in a lot of pain , his face was covered in spots which were openly infected. Possibly why our GP was so proactive. We got the Dermo appointment by the end of the second antibiotic so 6mth from the initial refaral.

We went with the accutane option and it’s been a miracle drug for her. She has no scars, no residual pigmentation. It’s like the acne never happened.

Her post accutane skin care regime includes topicals a few times a week and topical clindamycin for any flare ups. She’s aware that there’s about a 15% chance of needing another course, be used she was on it going, but 14 years was actually a good time to go through it - not drinking, no chance of pregnancy (for her, maybe not some other 14 year olds).

My older daughter has stubborn hormonal spots and skin isn’t as bad, but some residual spots on her back and antibiotics/topicals haven’t worked. She’s nearly 17 and very slim but has had periods since 11 and day 1-2 absolutely floor her with pain and probably moderate blood loss. I have resolved this weekend to book a GP appt to discuss an anti androgen OCP, to hopefully kill two birds with one stone.

One of my colleagues is on spironolactone for adult acne, through a private dermatologist, and it’s been ok, but not great.

How often are your bloods monitored?
In theory, every 6mo, but I stopped taking it for several months (I'm very disorganised, nothing to do with the spironolactone) so I now haven't had one for longer than that.

How much does it cost you a month?
Around £200 all-in (consultation and bloods), so £400 annually

Where do you get them taken and do you live in a large city?
I do live in central London - I hadn't read your post about logistical difficulties earlier, so I feel you! I am also on the wrong end of London if you're in Kent...

What were the results on acne for you?
As above, I stopped taking it for quite a while. I definitely saw some improvement when I was first taking it, but for me it doesn't hold a candle to accutane. Accutane was a miracle for my skin and I had very limited side effects; with spironolactone my skin did clear up but was never perfect. If accutane was 100% then the Spiro was maybe 80%. Unfortunately I have had too many failed courses to go on another one...

I'm on NHS-prescribed spironolactone for something else; annoyingly I just threw out a load of it as I decided to stop taking it and my husband picked up the next three months' worth from the chemist as i didn't tell him. Wish I had sent it to you now as they couldn't take it back so just had to bin it. Felt v wasteful. And now I'm back on it again as consultant had other ideas. You do need regular kidney function tests (every six months?) and ideally blood pressure.

I am taking other pills I bought online though. Can't get them on NHS but can through a private dermatologist (my same consultant, if you pay them privately..) Was going to save up but then looked up doses myself and pay £70 a year for the same end results. I'm having regular blood tests for the other stuff anyway. Consultant rightly unimpressed. And yet I'm getting huge improvements.

Spironolactone is a pretty strong diuretic and regular kidney blood tests are essential.

@ClarificationNeeded

I am taking other pills I bought online though. Can't get them on NHS but can through a private dermatologist (my same consultant, if you pay them privately..)

Ha, that old story! Can't help but think it's set up like that on purpose. Follow the money...

Please don't be put off your son getting accutane. I took one course as a teenager and it worked perfectly. I don't remember any side effects and I was given a very high dose - I don't think they would blast anyone with that now. Because I was still young, I had no scarring once the acne cleared and I then had many years of compliments that I had 'great skin' which made a nice change!
The effect of acne on someone's confidence is so awful that I feel it's important to give the other side.

@QueenCamilla my DD was on it. Hers was prescribed by a private dermatologist- I specifically researched it and asked for it. She started on a low dose and increased it slowly until it had an effect. Blood tests were annual. We have also had it prescribed by a private GP who was happy to and knew all about its off label use for acne. It's very cheap as a private prescription. If you see a private dermatologist you can get started on it and then they write to your GP to recommend it's prescribed by them.
It's not suitable for boys/men unfortunately due to its action on testosterone.
Good luck - we are in SW London so can recommend doctors if you want - just PM me.

My dd also takes this. NHS referral was going to be so long after years of trying all sorts of topical treatments and antibiotics so we paid for a private dermatologist and she was offered it. Hormonal contraceptives not an option for her. I’m not sure if she has any monitoring tbh, but she does now have it prescribed by NHS GP. It’s working pretty well.

@Localher0

I'm basically stuck with persuading the NHS here... The potassium bloods are time and temperature sensitive and have to be refrigerated & tested in a short space of time. The NHS hospitals have the facilities to do so and then only few private labs and hospitals.
When I tried going private in South Kent, the nearest private lab to do the test was is London...

Accutane was easy though: a finger prick at home and post!

I'm in a Norther City now though, so if the NHS option fails I'll try private again, there might be better facilities here.

Your daughter is very lucky you invested your time to help! My mum was more grated-carrots-and-egg-whites-on-the-face sort of mum 😂
How is her acne these days if you don't mind me asking?

Now I think of it, I spent a large part of of my childhood with vegetables and eggs on my face. There were whole books of "recipes"!
I also remember being in my dermatologist's home and her little son playing on the carpet whilst I was lying on the sofa with.... porridge on my face! That's how I take my oats, ladies and gentlemen! 😂

I think my childhood was a bit wrong. .. 😳😂

Thanks @TimandGinger for the other side. It really shows that medication works differently for different people. Here's hoping Accutane works for my DS too. After such a long wait from referral to appointment, he'll start new treatment just as his GCSEs begin.... not the best timing for a drug with such serious potential side effects... but fingers crossed, he could be much improved before starting a new sixth form college which would really help with his self confidence.

I was prescribed spironolactone once my GP referred me to a dermatologist after any acne treatment they could offer in primary care failed.

The dermatologist knew I had pcos and did not want to go back on Roaccutane (had done in previous years and the acne just comes back), so recommended spironolactone right away.

I now have it on repeat from my GP and my skin is completely clear. I've never had monitoring and it worries me a bit to read that I should be.

Anyone who is worrying about roaccutane here is one tip. You do not have to take the large doses. All you have to do is take the full culmination dose (based on weight this for me was like 10,000mg or something). If you worry about side effects you can take a low dose, just for a longer period of time. I first took 40mg a day and had a lot of side effects so my dermatologist put me on 20mg a day. This just meant it took a lot longer, many months but the side effects were barely noticeable. For a teenager it might be frustrating as you can’t drink and have to have regular testing and if you are a woman trying to have a baby you will have a long wait anyway as you have to wait for it to clear your system.

You will need to have tried all the first and second line treatments first, if you can get topical retinoid on prescription that is actually very good. I now maintain my skin with nicinamide which is a game changer!