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?

I was prescribed Roaccutane, years ago, for very bad Rosacea (treatment is the same for acne)., after every antibiotic, gel, cream, lotion, etc. failed to improve it.

I had to have regular blood and urine test done (to see if I was pregnant, then in my 50s)

It made me have a dry throat and lips (lip balm and drinking lots sorted that out), but the difference in my skin was astonishing! No exaggeration, but the difference was visible withing a week! After so many weeks, my skin had cleared up and settled down. The hospital took before and after photos.

@YouNeverSeeTheRealMe Actually so exciting to think that after 10+ years of trying every cream under the sun I might finally be given something that actually works! I can cope with a dry mouth for that lol

Both my son's had it, one needed it twice.

Dry everything including eyes, very sun sensitive also, other than that they didn't have any issues. It worked on them both and they had very severe acne, but it came back with one and he had a 2nd go. He gets occasional acne type spots still, about 6 years since treatment, but it's just one or two and much more manageable.

I've had roaccutane 3 times now. But my experiences of it were a long time ago now so less relevant.
I LOVED it. I was (and still am) quite greasy - so I adored the drying out. I remember by lips and inside of my nose being dry but that's easily sorted. I used ultra bland skin care as well.
I used to wake up each morning and before turning the lights on, having a feel of my face to see what fresh nightmare had erupted overnight. It felt like seconds after starting the treatment my skin improved 100%.
The regular blood tests and monitoring were not a bother for me.
I can totally see why people call for it to be ultra restricted, but for my part, it changed my life - not exaggerating at all.
Good luck, I hope you find something that works for you.

It completely cleared up my skin ( I got post-pregnancy acne that never went away) I do still get some hormonal spots once a month which the hospital said the medication can't fix but it is very few.

My skin got better almost immediately. My face was drier but not problematically. I just switched to Cetaphil moisturiser and moisturising foundation/ CC cream. TBH, my skin was so good I started going foundation free for the first time in my life. It also cleared up old spot marks/ discolouration which I wasn't expecting. My hair stopped getting greasy so it looked great and I didn't have to wash it as much.

Use Aquaphor lip salve. Buy lots as you will get lizard lips. It would be better to do it over the cooler Autumn months if you have a choice as your skin is extremely sensitive and easily burned. As for other side effects, I got night blindness so couldn't drive at night. I couldn't see my child in her cot bed when the light was off which was a bit scary. I started to get some pains in my ankles towards the end but it didn't;t last long. No long term effects at all.

Thank you for all the replies. So it seems dryness is a big side effect - the one I was worried about was suicidal thoughts? But it seems none of you experienced those? Also how long did you have to take them for?

My SD had it prescribed in her teens. It worked well, although she still gets spots around her period but they’re manageable. The moderately severe acne has never returned. I remember very dry lips and constant blood tests but no suicidal thoughts. In fairness, acne tends to make people pretty unhappy anyway so as long as you keep an eye on them, it’s a marvellous drug as far as my experience goes.

My nephew had it for severe acne and it cleared it up beautifully. Only side effects were the dryness as pp say. He had very dry lips and as he was taking it during the summer, he was careful to stay out of the sun.

It didn't affect his mood at all, no dark feelings. Certainly his experience was that it wasn't prescribed lightly - his GP referred him to a specialist after my nephew had tried various skin regimes and topical treatments (none worked) and once he was on roaccutane, he was monitored closely. I was sceptical about the wonder drug claim until I saw his experience. It was amazing how fast it worked and he's had no recurrence.

Feel much better bout taking them now, thanks everyone!

Oh I also forgot about nosebleeds. One of my DSs had a lot of nosebleeds probably related to the dryness. No negative thoughts as far as I am aware but both are neuro diverse so who knows?

@CaughtTheKaty
I am the mother of the girl in the press who died by sudden suicidal impulse due to this drug.
For everyone saying how great this drug is can I just say that the only difference between them and my child is that they were lucky. That’s it. No one knows who this drug will affect and who it won’t. Can I suggest you look on FB at some of the groups such as Life after Accutance or Accutane Survivors to read how this drug has affected people, not just mentally but physically too. These are first hand stories from people affected by this drug with side effects that no dr will advise about. It may help you make a decision.

Perhaps if you knew that the scientist who developed this drug as chemotherapy for brain cancer, pulled out of the research when it became clear that one of the side effects was that it worked to clear skin, fearing that the drug would be misused. His view was that to use it for acne would be like “using a nuclear bomb to destroy a shed” such is the dangers of this drug. Google the toxicity of concentrated Vitamin A on polar explorers.

In my daughters case the sudden wish to die came out of the blue on a normal evening on a day when she was in exceptionally high spirits due to some good news she’d just received. She had been perfectly normal 15 mins prior to taking her life. No one, not even herself saw it coming. And she is not the only one.

The MHRA have decreed that the benefits of this drug outweigh the risks whilst accepting this drug is causing deaths. In effect they are saying that those who succumb, and no one knows who it will affect, are collateral damage. My child was collateral damage to them. She was worth a million of any of those fuckers.

I hope you make the sensible decision and if not I wish you luck.

My sister took it for severe acne. And I mean severe - she was in pain with her face on a daily basis and the spots were truly shocking. Roaccutane transformed her skin - within a few months it was completely clear and didn’t even scar. But she had to go through the peeling first - which was pretty horrible, even the inside of her nose peeled and she had nose bleeds because the membranes thinned. But the spots never came back and she is very pleased she did it.

God how awful @DevastatedandDistraught I’m so sorry. I wouldn’t have posted my sister’s experience if I had known this was a side effect.

Roaccutane was the only thing cleared up my acne. Like you I tried everything else and nothing made a difference. The roaccutane worked wonders. I had very dry lips, eyes and skin but it was worth it. I never noticed any effect on my mood, if anything the improvement in my acne helped my mood. Maybe I was lucky in that respect. I don’t know. What I do know is that acne was destroying my life and roaccutane gave me it back.

@DevastatedandDistraught I'm so sorry that that happened to you and your daughter. I find it mad how a pill can do that to someone. I really appreciate your reply

My son's cystic acne cleared up but he had suicidal ideation and was very unwell. I'm still angry that the dermatologist knew his psychiatric diagnoses and still prescribed it and didn't warn us to watch him closely. It was pure luck I read a forum where people were discussing this as I had no idea why he was spiralling so badly.

Roaccutane worked miracles on my skin. I was desperate to have it after multiple prescription treatments didn't work, and I now can't believe how spotty I used to be when I look at old photos. I got some mildly unpleasant side effects while I was on it (mostly flaky skin and dry lips), but it was well worth it for the results.

@DevastatedandDistraught just read your post. I'm so so sorry for your loss 😔

@Coffeeandbourbons
Thank you. I don’t intend to make anyone feel bad but I do feel duty bound to share my story. Even though a little piece of me dies every time I do especially at the moment. It is 4 years on Monday since it happened and this time of year is so very hard.

I’m glad your experience was positive. It gives me no pleasure to hear about others suffering. And this drug does work to clear skin. But there are other options. It comes in cream form so isn’t absorbed so easily. Rarely offered by drs but a much safer option. Or even a very low dose over a longer period if you really must take it.

Some dermatologists hand it out without offering any other alternatives. Even to people like my child who’s skin was ok after long term antibiotics, just greasy. She should never have been put on it. It’s supposed to be used in the most severe of cases when all else has failed but in reality no one monitors how effectively it is prescribed. It’s a lottery.

At least on reading Annabel’s story people will be aware of the fact that it can cause sudden suicidal ideation and look out for these “waves” which come over patients and hopefully recognise what is happening before it’s too late. We weren’t aware. We were looking for signs of depression of which there were none.

Its worth noting that patients are still at risk of suicide after treatment has finished for up to, if I remember correctly, a year.

Just to add - I was already on antidepressants when the hospital prescribed Roaccutane. My mood didn't worsen, it got better because my skin improved.

DevastatedandDistraught So very sorry for your loss x

DH used it for acne when younger. He got really prone to skin infections when he took it. He kept getting infections that needed to be cut open and they all healed terribly. He doesnt have acne anymore, but he has lots of big scars all over his body from it. It wrecked his immune system and he kept getting ill for a good 2-3 years after stopping the meds.

@CaughtTheKaty if you do decide to go ahead, make sure you are monitored frequently. I don't know if it's the same everywhere but my nephew was prescribed it very short term, then reviewed and was given a lot of advice and support while on it. His self esteem was rock bottom while he had cystic acne; he had stopped going out socially and was struggling to even get into college lectures- it was impacting hugely on his life. Plus it was painful; really deep sore acne which he described as being like someone constantly pressing on bruises over his face, shoulders and back.

Yes it's a trade off because as with any drug there are potential side effects. My sister said the drug was truly life changing for my nephew though, and she believes he would probably have dropped out of education if he hadn't had it.

I have worked with a client who had a history of anxiety, they were doing well and discharged but came back in crisis after starting this medication.
It had nasty mental health effects, I would be watchful about this.

@DevastatedandDistraught I am so incredibly sorry to read this. On roaccutane I had beautiful skin and a stay in a psychiatric ward after trying to take my own life. I was extremely unwell (with no prior psychiatric problems) and I was on antidepressants and antipsychotic medication for a year afterwards. It is known for causing severe depression in some people. I would exercise caution. The effect on my skin didn’t last and I had nlite laser treatment eventually which was much more successful.