Roaccutane deaths

[PrincessHoneysuckle]

mol.im/a/8613003

Sorry its from DM but saw this and wanted to share as it appears ot made two girls suicidal from taking.Sorry if in wrong place.

I know 2 people who hsd problens from it. Both mot normally anxious people, but both were extremely anxious enough to intefere with their everyday life. One also had another of the rare symptoms to do with skin.
However it did clear up their skin problems.interestingly the one person i know who has snxiety problems before hand didnt het worse

My friend had pancreatitis from roaccutane and nearly died. She has EDS now also but I don’t know if that’s related.

Its not something I've ever taken but I have heard of it

I took it and had no MH effects. However, it didn’t clear up my acne despite taking it for a long time (and not that low a dose either). Just mentioning as it’s often recommended on MN as a magic bullet, but it isn’t for everyone.

It’s not to be taken lightly and obviously it is awful about these girls but, genuinely, it gave me my life back. I suffered from horrendous cystic acne all over my face. The pain and embarrassment brought me to tears most days and roaccutane cleared my skin in 6 months. Years of topical solution and anti biotic didn’t touch it.

It’s really awful it has those side effects for some people, but it changed my life. My acne was awful for most of my teenage years and nothing worked till I took this.

I have just read that article and there is nothing to suggest the roaccutane was the cause though. The girl in the UK had not displayed any signs of depression/suicidal thoughts before she killed herself and obviously her family were looking for reasons it happened, but her taking roaccutane could just be coincidence, not cause.

She has EDS now also but I don’t know if that’s related

EDS? If you mean Ehrlos -Danlos Syndrome that’s genetic so no, roaccutane wouldn’t cause it.

It is reported to affect mood in some people.
However severe cystic acne is also very depressing.

My DH has taken it and it made him very low (he was a teen at the time). He said it worked on the acne though. I'm really hoping my girls don't inherit his skin issues.

EDS (ehlers-danlos syndromes) are a set of genetic conditions, of which she will have one. There are several types with varying symptoms and often related issues and some are more serious generally than others and can be life limiting (eg vascular EDS). Symptoms range from mild to entirely disabling and for some, myself included, it is a horrible illness. She will always have had it, though the symptoms may not have been noticed or been problematic until later on. The average diagnosisis from first symptoms of complaint is about a decade, unfortunately. Roaccutane may have exacerbated some symptoms i suppose but that is all.

I think Roaccutane is well known to have some risks for some individuals. It is explained very thoroughly when prescribed and is given only after all other treatment has been tried and not to those with prior mental health concerns. You have to have regular blood tests on it and consent to pregnancy testing and agree to use two types of conception before it is prescribed.
For a lot of people the results seem positive and life changing living with acne makes many people suicidal, affects their mental health ans confidence and can be physically very painful.

I tried it, unfortunately it didn't work for me and did cause high anxiety and I found the skin dryness sore and intolerable so ended up stopping after a few weeks

My daughter developed severe cystic acne a couple of years ago. Roaccutane was the only thing that helped. Severe acne can often make girls/boys severely depressed, so roaccutane can improve this. It can cause a flare up initially though, before the skin improves so I wonder if this could have been a factor?

My 14 yr son has been taking it since February - he has severe acne which was treated with oral and topical antibiotics combined with various face washes for 18 months before we agreed to him starting it. We are very aware of the side effects (as is he ) and we keep a close eye on him. 14 year old boys are prone to mood swings however and distance learning/lockdown/lack of team sports has made it tricky to distinguish between what’s normal for his age and what could be induced by the medication. His acne has improved hugely and we are hopeful that his current 2 month prescription (to end in September) will be his last.

There have been links between Roaccutane and suicide for years and years though? Since I was a teenager and I'm mid 40's.

I would think there's a question about education as part of prescribing if people still need warning.

We got a very detailed outline of side effects from the dermatologist when she prescribed the Roaccutane and again from the GP when my son attended for the initial blood test. Every follow up with either the dermatologist or GP involves a conversation about the side effects he’s experiencing.

I had an absolutely horrible time on it as a teen and it didn’t clear my acne. I went on the mini pill afterwards and that worked for me. I’d be very reluctant to have my children take it after my experience.

Everyone is different and will not respond in the same way so it’s a bit of a scaremonger story.

My son had two courses of roacutane as his cystic acne was all over his upper body and face, absolutely covered in it for years.
The mental health issues he suffered as a result of the acne far outweighed the risks of the medication .

I was on it for 4 months on a high dose with no mood issues, I asked the nurse if they’d had any depression and she said not & that it was all dry lips, eyes, skin, reduced night vision. My hair fell out a bit but it grew back.

It’s a shame because articles like that probably written by someone who has no idea how debilitating acne is will put off people from taking it. Their quite happy to print stories about how silver serums cleared up someone’s cystic acne in 5 minutes though with a helpful link to buy it which is akin to those click bait ads telling you the one simple trick to losing belly fat.

Well the EDS hasn’t nearly killed her but the pancreatitis did so I think that’s a slightly more pertinent point and shouldn’t be overshadowed by me not knowing much about EDS. Pancreatitis is a well documented side effect and has been known for years. As has suicide, it occurs 5 times more in roaccutane patients. So it could be coincidence sure, but it’s probably not.

Absolutely changed my life for the better, despite history of depression

what a sad case.

it is a very potent medicine.

it's in the package leaflet that it can have an effect on mental health and this should akso be mentioned by the precsriber and pharmacist.

I was like a PP - experienced mental health issues in everyday life but the medication didn't have an impact at all.

I had extremely problematic skin and had done since I was 11 - took this when I was 16 as an absolute last resort and I've never had an issue again. Get a spot maybe once on my period and that's it.

Roaccutane prescribing is really heavily regulated. There are loads of drugs that could previously only be prescribed in secondary care which are now prescribed by GPs- roaccutane is not one of them. Still consultant only, only a month at a time can be given and the script must be dispensed within a short time. Monthly check ups, frequent bloods and repeated dire warnings about side effects. All of that is not without reason, but honestly, cystic, scarring acne is totally shit. Patients on the drug are already a selected group who are more likely to have problems with self esteem and their mental health because they already have a visible severe skin condition. Drugs have side effects. I’ve seen someone with pancreatitis from cocodamol, another person with liver damage from taking a statin, several with lung damage from a common antibiotic used for UTIs- I could go on, it doesn’t mean those drugs are never right for anyone. I don’t know a single other drug where the side effects are so repeatedly emphasised. And yet it has helped so many people. It’s frustrating to see articles like this because some people will read them and not seek help for a horrible condition because they think they’ll be put on a dangerous drug. It doesn’t work for everyone, but so many who it does work for will tell you they wished they’d done it years ago.

Oh I didn’t know about this

I remember a student at school used it, for very bad acne

I know there is a Mumsnetter whose 15 year old killed her self while taking it. It can have horrifying side effects and of course not everyone will experience them. It can really clear you acne. My brother was on it and although it did completely clear he did suffer from mental health problems. I’m not sure if it was whilst he was taking the medication. It one of the reasons my parents wouldn’t allow me to take it. He believes that it’s caused him many health conditions but obviously there is no way of knowing. He still gets acne but not as bad as a teenager.

They have been saying for years about the side effects of roaccutane so that’s nothing new. But many still are not aware