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To ask if anyone has been/is on Roaccutane?

(66 Posts)
suchagoofball Wed 27-Feb-19 14:18:21

Hi all

I am starting Roaccutane today and am feeling rather nervous about it - I don't think I've ever been on a medication with so many serious possible side effects before - but I've been suffering from acne since I was 16 (I'm now rapidly approaching 33) and I've been on different medications/lotions since I was 17 with no effect so feel like this is something I have to try.

I'm trying to concentrate on the potential side effects that I can do something about, e.g. the dry skin/lips.

I've done some googling for products I can use to help combat the dryness but most of the recommendations are for expensive products and, frankly, I can't afford these at the moment (money is tight).

Does anyone have any recommendations for products that are a reasonable price?

TIA smile

PierreBezukov Thu 28-Feb-19 21:58:54

I was on it in my 20s and it was fantastic - a miracle drug. It not only cleared up my skin permanently (now in my late 30s and I have lovely clear skin) but when I was on it I stopped having oily hair and didn't have to wash my hair every day! Vaseline got me through - didn't need anything more expensive.

Fazackerley Thu 28-Feb-19 21:59:05

My dd took it
It cleared her bad acne amazingly but the side effects were tough. After a year clear the spots started to.come back. She's on Yasmin pill and this had cleared them

Dd2 also had bad acne went straight to Yasmin her skin is beautiful no need for roaccitane

suchagoofball Fri 01-Mar-19 10:42:19

One thing to add to the above - I didn’t want to shell out of Elizabeth Arden either, but normal lip balms just didn’t cut it, even carmex, blistex...my Derm prescribed me “yellow soft paraffin” - honeslty amazing stuff for lips. Better than EA imoand very very cheap, pretty sure you can buy it online for less than £2. Good luck!

That's really good to know, thank you! I will take a look online!

There's a YouTuber called *@Thataylaa and she documents her time on it last year with all the ups and downs, skin care and life style changes she had to make while on it. Check out her channel, it's super helpful and will give you a headsup on what's to come.*

That's fantastic, I will take a look. Thanks for the info!

*Are you going to increase your dosage OP?

I did 20mg for the first month then went up to 60mg.*

I'm not sure - the dermatologist did say they'll start low and increase the dosage but it wasn't mentioned at the Roaccutane clinic. I assume it will depend on how I get on with the lower dose!

*My dermatologist recommended cetaphil cleanser and moisturiser. They are not expensive - amazon has best prices. I still use them now.

Good luck!!*

Thank you! I'll look into Cetaphil on Amazon.

I just think about how worth it it will be at the end, and the max length of time you can be on it 6 months so very short term in the grand scheme of things!

That's what I keep telling myself - 6 months isn't long and should fly by!

Ohnonotuagain Fri 01-Mar-19 10:50:54

DH was on it years ago. Cleared his skin but gave him almost constant nose bleeds, suffice to say he didn't stay on it.

RosesTulipsDaffodils Fri 01-Mar-19 11:07:58

I took it 20 years ago as late in my twenties, I'd had enough of moderate, unrelenting acne that hadn't subsided. Like mentioned above, I still appreciate how great healed skin feels. It has had a lifelong effect where I no longer had any acne.

I also recall how it felt -hard to describe but it was like every part of my body was dry. It was not too bad for me though -lots of lip balm and sunscreen.

yma123 Fri 01-Mar-19 14:06:02

I was on roaccutane when I was about 16 and it worked absolute wonders, my skin was so bad and I was on it for about 2 years and then stopped and since then my skin has been miles better, I obviously get a few breakouts now and again like everyone, but it's so much better! Just be careful to make sure you're on contraception, and there's a risk of it affecting your mental health, so watch out for that, although I personally never experienced that! The only side effect I really had was my skin being dry - my lips would crack and sometimes I'd wake up with dried blood in my nose because of the skin being so dry, but just make sure you have a decent lip balm and moisturiser with you and you'll be fine! It doesn't need to be anything expensive, I just used my normal face and body moisturisers and lip balm that I was using before I was on it, and that did the trick!

MollyYouInDangerGirl Fri 01-Mar-19 16:18:43

Just wanted to add to my comment from yesterday. I had a catch up appt today and they've upped my dose from 40mg to 60mg as I'm coping fine with the side effects.

She did say though that my skin does look quite dry and that my e45 cream isn't cutting it Haha, she did give me loads of free samples of la roche posay (both gentle cleansers and moisturisers) and a pot of cetraben which she recommended for my lips.

smile

Goodmum1234 Fri 01-Mar-19 17:52:46

I had 2 courses of it over 20 years ago and my skin has been great ever since. I get occasional spots but not as it used to be.

Never ever wax, have all that done before you begin treatment as it takes a layer of skin off. I did my eyebrows and it hurt!

Used e45 on my body and any moisturiser in my face. Can’t remember which lip balm but today I’d recommend burts bees as it stays put and lasts about a year.

Ensure you will not get pregnant under any circumstance.

I felt like my whole body was shedding all the bad stuff which felt really good, good luck

problem1234567 Fri 01-Mar-19 19:32:21

For those of you commenting on dosages I've been on 20mg for two months.
My understanding is that it doesn't matter how many mg you have per day as long as you have the 'required amount' at the end.
So let's say the desired amount is 12mg - you could have 3mg a day for 4 days, or 4mg a day for 3 days. Just making those numbers up but that's the idea.
So if you've concerns about going up to 40mg etc I'm pretty sure the derm would agree to keep you at a lower dose and just keep you on it for longer.
I also think the dosage they put you on/start you from varies depending on the type of acne you have. Eg I don't really get spots, or the all over the cheeks acne, I only ever got horrible deep under the skin cyst types, which perhaps is why she thought 20mg is fine for me.

prozacgirl Fri 01-Mar-19 19:42:50

You'll be amazed. The side effects are nothing compared to the incredible feeling of having clear dry skin. I can remember it well. If your dermatologist is starting you on a low dose I wouldn't overly worry. Stay out of the sun though. And use contraception.

MonicaGellerHyphenBing Fri 01-Mar-19 19:51:53

I was put on Roaccutane in my early 20s and it worked like a dream. I'm now 28 and have barely had a spot since.

I experienced very few effects, just very dry lips. I found Aquaphor Healing Ointment a godsend!

suchagoofball Fri 01-Mar-19 21:28:20

Just be careful to make sure you're on contraception, and there's a risk of it affecting your mental health, so watch out for that, although I personally never experienced that!

I had to sign a form stating that I would not stop using contraceptives while I'm on it (not that I would anyway!) and my DP is going to keep an extra close eye on me re mental health!

I just used my normal face and body moisturisers and lip balm that I was using before I was on it, and that did the trick!

That is very good to know!

She did say though that my skin does look quite dry and that my e45 cream isn't cutting it Haha, she did give me loads of free samples of la roche posay (both gentle cleansers and moisturisers) and a pot of cetraben which she recommended for my lips.

Free samples are always good!

Never ever wax, have all that done before you begin treatment as it takes a layer of skin off. I did my eyebrows and it hurt!

I was warned not to wax but I don't anyway as it brings me out in a rash!

I also think the dosage they put you on/start you from varies depending on the type of acne you have. Eg I don't really get spots, or the all over the cheeks acne, I only ever got horrible deep under the skin cyst types, which perhaps is why she thought 20mg is fine for me.

I was told they decide on the starting dose based on your weight so it will be however many mgs per kg (can't remember the numbers!)

* If your dermatologist is starting you on a low dose I wouldn't overly worry. *

I am hoping that as it's a low dose, the side effects won't be too bad!

QuirkyQuark Sat 02-Mar-19 09:27:15

The hospital I was under for it had a compulsory pregnancy test before they gave the prescription out and they only gave a month at a time so you have monthly pregnancy tests.

U2HasTheEdge Sat 02-Mar-19 10:58:31

My eyes are still really bad. No infection. I will see my dermatologist nurse Thursday so I can discuss it with her. I think if I had started using eye drops from day one they may not have got so bad.

BTW I am not on birth control. Husband had the snip years ago and we avoid fertile times/ use a condom.

I preferred to go up to a higher dose to get it over and done with quicker.
Actually I started on 30mg, not 20.

One thing you will likely experience at the start is a hot face. This should go. I still flush at times though. I went through a stage where I looked really red but that has died down and now I just have a nice colouring.

PookieDo Sun 03-Mar-19 15:59:14

I had to use Hycosan dry eye drops - they are about £10 in boots when I got dry eyes

suchagoofball Sun 03-Mar-19 19:46:47

The hospital I was under for it had a compulsory pregnancy test before they gave the prescription out and they only gave a month at a time so you have monthly pregnancy tests.

Yes, that is the same for me, plus I had to sign a form to confirm I understand the risks and that I will come off contraception.

My eyes are still really bad. No infection. I will see my dermatologist nurse Thursday so I can discuss it with her. I think if I had started using eye drops from day one they may not have got so bad.

I was advised to start using eye drops even if I don't feel like I need to, so have been doing so.

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