Experiences with roaccutane?

[CaughtTheKaty]

Obviously heard a lot of negative things about roaccutane but I've tried everything topical and nothing works, tried antibiotics and they don't work. I've had a dermatology appointment and she said she's happy to put me on roaccutane, what can I expect?

@crimsonpeak I am sorry to read this. I hope you are ok now. My daughter had no prior issues with mental health. On the contrary, she was the most optimistic, happy person I knew. Please can I ask you and any others who have suffered side effects on this drug to report them on the MHRA website to the Yellow Card Scheme. So many people don’t and this is how they get away with saying this medicine is safe when in fact so many suffer on it. Please, for my daughter’s sake report it🙏

And for the poster above who said she was on anti depressants when she was prescribed it that is outrageous. This drug should never be given to anyone with previous mental health issues. This just proves the point that although there are supposed to be strong guidelines around prescribing this drug in fact they just hand it out like sweets. And then when something happens they just shrug their shoulders and say “not Roaccutane’s fault, patient was mentally ill”.

As for monitoring , my daughter had her “monitoring” session 4 hours before she died. I was with her. It consisted of one question, “ how’s your mood?” to which she answered “Fine” because it was. She took her life 4 hours later. So for those advocating monitoring to keep them safe- it won’t.

I took it at 41 after 20 years of nothing worked. 4 months, got the usual dry lips, tired, poor night vision, one night of backache.

I was very snappy and grumpy on it, it has definitely helped the skin. But I was quite a batch on it !

@DevastatedandDistraught what is a monitoring session if you don’t mind me asking? I don’t recall my sister mentioning this. I might ask her in more detail whether it affected her mood and encourage her to report it if so, she hasn’t mentioned the drug in years as she stopped taking it when she was 16. I had no idea it could be so dangerous 💐

My experience (many years ago - I'm mid 40s now and took it in my late teens), is 100% positive. Negatives were very dry lips, chapped hands and felt the cold very easily. Positives were very quick improvement in my acne and my hair stopped being greasy so I only had to wash it once a week. The need for fairly regular blood tests didn't bother me.
Most of the negative reports surrounding this drug relate to low mood. Perhaps proceed with caution if you're prone to depression?

Most drugs have side effects that affect some and not others

Roaccutane works really for clearing acne.

Having bad acne in itself can cause negative feelings

you can find and look for the negative in anything

Fact is if you have acne, hate it and want it cleared permanently then taking Roaccutane will do that.

Look into low dose regimens - much more common in Europe I think- takes longer to see results but far fewer side effects

@Coffeeandbourbons
You have a monthly “monitoring” session where, if female, you need to take a pregnancy test, and they are supposed to ask how you are feeling. Occasionally a blood test to check liver function. The monitoring is touted as being a way to pick up any side effects. In our case the monitoring sessions were no more than a tick box exercise and clearly don’t work because if they did my daughter would not have taken her life 4 hours later. They may be helpful for those who have begun feeling depressed but this wasn’t the case in my daughter’s case. It is not possible to monitor for sudden suicidal impulses which can come out of the blue.
In my experience having spoken to others who have lost children to this poison
, even if depressive scare reported it doesn’t necessarily mean they take you off the drug which is terrifying.
For information, it doesn’t happen to everyone and I don’t mean to alarm, but this drug has now been shown to cause erectile dysfunction in males which can be permanent. This side effect was recognised in the recent review into its safety. It doesn’t take a genius to realise how this might affect the mental health of a young man who has been affected this way. This side effect is rarely disclosed. It takes a very brave young man/boy to admit to suffering this way, especially if they do not connect it to having taken this drug. You can imagine how this in itself can leave some suicidal long after finishing treatment. I hope your nephew is ok, hopefully you would know by now if he wasn’t but it is worth knowing these things as drs do not warn of them.

I was one of the lucky ones. I'm so sorry to all those who have been so badly affected by the side efforts.

I took it 30 years ago after everything else had failed and I'd had 10 years of awful acne.

It cleared up my acne, dried everything else out (which was bearable) - I took it for about 6 months. No long term problems following this.

My son took it for bad acne years ago... worked for him with minimal side effects

Im on it atm. I’m 36 and had tried everything else, YEARS of long term antibiotics.

I am absolutely delighted. I didn’t think it would work, after every other “miracle product” didn’t work. I wish I’d gone to the dermatologist sooner. It has done wonders for my confidence, not just about how I look but in general, I’m booking surfing lessons, i paraglided, took a language exam… I’m thrilled! It made me realize how much my skin insecurities dominated me in general. I am/was worried about the mental health links, but considering how low my acne has made me for years, I went for it.

DD's acne isn't even that bad (what you see if you google "mild acne") and she's on it, now.
Managed to get a prescription by crying at the GP, basically.

She does a good job hiding her MH issues, never formally diagnosed, but existing MH issues are not inconsiderable.
She's an adult so I get to sit on my hands & wait.
Does sound like A LOT of monitoring goes into who is allowed to get it.

I’ve had two rounds of it. First time, it was tough. Very dry skin, dry eyes, dry lips. It felt like it dried out my insides- my Achilles were very tight when I started to walk after sitting, for example. However it did clear my skin. Honestly, it looked better hours after the first pill.

Two years later I did a second round, as my acne returned. This was much easier with far fewer side effects. My skin stayed clear for the next 8 years. I’m currently keeping it ok-ish with Skin and Me.

One small point: you’ll need to use lipbalm regularly while on the course. But when you’re off Roaccutane, try to wean yourself off frequent lipbalm usage. I ended up with a nasty skin reaction caused by frequent lipbalm use that took ages to sort.

Wow. At the time I was on it a GP wasn’t the route to roaccutane - it was the dermatologist and took months of appointments. I had to have tried every alternative medication. I remember my skin going back to its original state post roaccutane (and post nervous breakdown) and crying in the car on the way home from a dermatologist appointment at hospital as I couldn’t afford further laser treatment - even the dermatologist had said research into acne wasn’t prioritised and laser treatment would most likely never be offered on the NHS, despite it clearly working. I was just offered roaccutane again, despite being suicidal on it. I don’t know if things have changed now. The only thing that has finally sorted my skin is having kids!

I've just finished my course of Roaccutane. I'm 42 and had acne since I was 11! Finally my skin is clear! I'm so happy with it.
I was very thirsty and had extremely dry lips so was constantly applying lip balm. I don't think it really affected my mood too much.

My GP was happy for me to go on Roaccutane but the consultant tried to get me to do antibiotics again (for about the 15th time) I said I'm not leaving without roaccutane so he put me on it! I'm so happy now. I'm sitting here with no make up on which I would have never done before!

I was on it in my early 20s, so around 20 years ago.
It cleared up my acne, but it came back again after 8 months or so.
I had some side effects, my mental health took a real nosedive, I started self harming and ended up on antidepressants. I've never had any mental health problems before or since. I also ended up with a b12 deficiency afterwards, and my hair thinned drastically.
I feel it really wasn't worth it, given that my skin ended up just as bad as it was before.

I am mid 40s and have had 4 courses over the last 20 years.

The first 2 were a high dose over a short term.

Second 2 courses were longer lower dose courses which I much preferred. The monitoring has increased too, regular blood tests and assessments of mental health.

I love being on it. It is the only thing that clears my skin. It does return with me though, so I end up taking courses of antibiotics between the roaccutane.

@DevastatedandDistraught I am so sorry about your daughter. Losing a child is every parent’s worst nightmare. Thank you for your work in raising awareness.

OP, I usually don’t comment on threads like these but the poster I’ve mentioned above made me feel obliged to share in case it helps someone. I couldn’t just scroll through and leave.

It did improve my skin temporarily (although it’s not the wonder drug for everyone - I still have bad skin) but I also had negative psychological side effects of night terrors and hallucinations (at the same time) which felt like psychotic episodes. They were really frightening (at first, I thought it was something like a poltergeist although I am a sceptic!) and I worried they were the start of psychosis and that the drug might have a long term effect and permanently alter my brain or I’d get psychosis or something later in life eg postpartum. I had to sleep with the light on and I was scared to go to sleep.

I’d exhaust all avenues first. It’s a potent drug hence the need for pregnancy tests. I don’t want to scaremonger but if you decide to use it, do stop immediately if you have any concerns and share them with your dermatologist and loved ones straight away.

I forgot to say my hair was like straw too and fell out easily. Also frightening. But that did stop when I came off it. Think it was the drying nature of the drug. It wasn’t like I lost a noticeable amount to others but it was noticeably thinner to me and family.

@DollyP88 please can I urge you to report your symptoms to the MHRA Yellow Card Scheme.
The more reports they have the less they can pretend this medicine is safe.
For Annabel, who, in 2 hours time will have been dead for 4 years due to this drug 💔

Absolutely agree it's always important to report symptoms. I used the Yellow Card app to report what I suspected might be side effects of a vaccination I had. It's all about informed decisions. Every medication has potential side effects and Roaccutane is 'heavy duty' stuff in that it's not to be taken lightly, it should be a 'last resort' when other treatments have failed and where acne is having a serious impact on someone's well being. I've no doubt it can be life transforming in some cases - and I was a sceptic to begin with. I know in the case of my DN it rescued him from significant mental health issues as well as the physical pain he suffered from severe cystic acne.

DS had terrible cystic acne, 6 months on roaccutane cleared it up. He still gets spots, but as a result of his rubbish student diet not full-blown acne.
I was very worried about his mental health being affected by roaccutane as he already had some things going on, but he was fine - in fact he cheered up a lot and even eventually emerged from behind his fringe.
if you’ve tried everything else, it’s definitely worth a try, but be aware of the potential side effects, and have someone onside who knows you well and can let you know if your mental health appears to be impacted.

I will. Thinking about you.