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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

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.

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

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.

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.

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!

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!

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.

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.

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

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

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!

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.

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.

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!

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

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.

MollyYouInDangerGirl Thu 28-Feb-19 21:55:46

I'm 25 and am on it now. My side effects have been really dry skin and lips and headaches. The only things I've bought to combat the side effects are paracetamol and e45 cream which I constantly slather myself in!

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!

SaltedCaramelEverything Thu 28-Feb-19 21:52:31

I was on it OP also minimal side effects - just dry lips.

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

Good luck!!

MrsBungle Thu 28-Feb-19 21:44:05

I took a course of roaccutabe about 20 years ago. Literally the only side effect I had was that I no longer needed to wash my hair every day when I was on it. My acne cleared yo and never came back bar the odd spot. Unfortunately my greasy hair did return! Not everyone has terrible side effects.

U2HasTheEdge Thu 28-Feb-19 21:43:32

Are you going to increase your dosage OP?

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

U2HasTheEdge Thu 28-Feb-19 21:41:54

My eyes are driving me crazy today. Scabby in the corners and very sore and red. The eye drops aren't helping. Any Roaccutane users have any tips for this?

SalrycLuxx Thu 28-Feb-19 21:37:29

I had it as a teenager. Its a Wonder drug. It literally changed my life. The dry lips sucked, and you should avoid strong sunlight, but it’s worth it. Not had any skin Problem since!

Sunkist12 Thu 28-Feb-19 21:34:54

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.

Hereiamitsme Thu 28-Feb-19 21:31:55

Another success story here! I took it a year ago, wish I’d done it years ago!
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!

suchagoofball Thu 28-Feb-19 21:24:59

I'm on a low dose - 20mg per day.

That's the dose I'm on - I was hoping that the low dose would mean the side effects wouldn't be quite so bad!

However, know that you'll have to go every month for blood tests, quick chat with the consultant and the dreaded pregnancy test.So you'll have to be able to get out of work once a month.

Yes, I was told about the blood tests etc long before I started taking it. Luckily I'm self employed so I only have to ask myself for permission to leave work!

So if you are booking anywhere for a holiday, my tip is to pick somewhere humid.

Sadly my finances do not stretch to a holiday at the moment but I will definitely bear that in mind if that changes!

But, several people have already mentioned this, use sunscreen.

I definitely will!

My thoughts are be careful as the dose goes up but it has defi cleared the skin which was making her so low

I will definitely bear that in mind - I'm starting on a low dose but will be careful if it gets higher.

You don’t need to buy anything fancy or expensive. Just get plenty of sunscreen and a wide-brimmed hat when you’re planning on spending time outdoors - I once got sunburnt whilst on Roaccutane and it’s extremely painful.

Very glad to hear it doesn't have to be expensive - pretty much all of the sites I found when I googled were recommending expensive products and I was getting worried!

I already have a wide brimmed hat and will slather myself in sunscreen - I'm very pale so have to do so normally anyway!

Thank you all so much for your views and suggestions - I will make a note of them all!

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