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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

Mari50 Wed 27-Feb-19 18:10:52

The thing I loved most about roaccutane (aside from getting rid of my acne) was that my hair wasn’t greasy anymore. It was amazing not having to wash it daily, in fact I could leave it as long as I wanted and it never got greasy. It was heartbreaking when things went back to normal.

suchagoofball Wed 27-Feb-19 18:43:07

Thank you all so much for your responses! It's really good to hear so many think it was worth it even with the side effects!

*She did have issues with dry lips, but just had to make sure she had a lipsalve on her at all times.

Also, when the summer comes try to spend as little time in the sun as possible because it makes your skin much more vulnerable to UV rays.*

I've got a couple of lipsalves in but I'll pick up a couple more to make sure they're whether I could potentially need them!

The dermatologist did say about sun sensitivity - I'm extremely pale anyway so always wear high factor sunscreen in the summer but she advised to wear it whenever I go out, even if it doesn't look sunny, so will be doing so and covering up as much as possible.

* I keep pots/ tubes of lip balm everywhere (desk/ car/ handbags/ bedside table/ etc) and find that Vaseline does the job.
Good luck!*

Thank you! I am feeling really nervous at the moment but I've now been battling with it for half my life and I really want to be able to look in the mirror without feeling like I want to cry!

The dermatologist recommended Vaseline for the nose too so will definitely pick up a pot!

Oh and eye drops once or twice a day

The dermatologist also recommended eye drops so my DP picked up some for me so I'm ready to go!

Is it a scary drug that requires a lot of thought prior to taking it- yes.

I've definitely given it a lot of thought - when I was first referred to dermatology I had an appointment in November 2017 and the dermatologist prescribed me one other thing to try and the plan was that if that had no effect after three months, she'd put me on Roaccutane. As it happened, she left the department and the dermatologist I saw next referred me to endocrinology to ensure that it wasn't hormonal before finally agreeing to put me on Roaccutane - all in all, I've been thinking about it for over a year! I would have really liked it if something else had worked but I really don't feel like there's anywhere left to go now.

* used Elizabeth Arden 8 hour lip salve as vaseline etc were hopeless, the 8 hour cream was the only thing that worked. It's pricey, but you only need a tiny bit so it lasts forever.*

I have seen the Elizabeth Arden one mentioned on quite a few websites - it's, unfortunately, a bit out of my price range at the moment but if nothing else does the trick, I might have to splash out!

Finally, please ask a friend or family member to keep an eye on you. Roaccutane is known for causing mood swings and my emotions went up and down like a rollercoaster - not helpful midway through my A levels!

Oh no! That sounds like a complete nightmare when coupled with exams! Hope you got through your A levels okay!
I have made my DP aware of the symptoms and he is under strict orders to keep an eye on me!

Be prepared for joint pain too, it really does dry out everything

Yes, the dermatologist did say it could cause aches and pains. Did you use/take anything for the joint pain or was it bearable?

For my lips I use lots of different things. Lush ultra balm, Elizabeth Arden 8 hour cream (not worth the price), all different types of lip balms. Use a vaseline type product on top of any lip balm to seal it in. Moisturise very well. I use Cetaphill on my face, cleanser and moisturiser. E45 on my body and Hydromol ointment for night time.

That is really helpful, thank you!

It's worth the discomfort, you should feel really positive about this! I was so down for years over my skin and this is a miracle drug to me!! At the time they made a huge thing about me not getting pregnant while on it because it could seriously harm a baby. I don't know if that's still the case because I took this 15 years ago.

I am definitely excited about the prospect of being able to look in the mirror without feeling awful (at least not about my skin!) but I can't help but be a bit wary about the long list of possible (serious) side effects!

Not being pregnant is still a huge deal - I was warned about it multiple times (there is a very high risk the baby will be deformed if you get pregnant while taking it) and had to sign a form to say I've been told about the risks and agree to remain on contraception throughout.

MiGi777 Wed 27-Feb-19 19:24:15

It's going to be amazing! I hope you have the same experience as me because after years of feeling self concious and being really down over it I felt lovely! Let us know how it goes!!! 💐💐💐

suchagoofball Wed 27-Feb-19 20:38:34

Thank you! I'm looking forward to the results, just not the side effects! I will let you know how I get on.

LuckyMarmiteLover Wed 27-Feb-19 20:44:23

I took it but ended up with corneal ulcers which were horrendous. I ended up an inpatient in the eye hospital with my eyes taped shut whilst they healed. I still suffer with dry eyes 25 years later sad

Banhaha Wed 27-Feb-19 20:52:37

I used Eucerin Aquaphor balm on my lips at night when I was on it. Not the lip balm, the skin balm. Lasted ages through the night. Also put a dab up your nose if that starts to get dry to prevent nosebleeds. Cetaphil wash and moisturiser are so gentle. Drink lots of water and good luck smile

PookieDo Wed 27-Feb-19 20:55:50

Yes I’ve done it twice!
I did low dose this time and ended up on it for nearly 2 years!
Touch wood I am still acne free after I stopped a few months ago and my main side effect was I have been left with huge melasma patches

My other big issue was my scalp and hair. It was so dry and like a desert bush. I really struggled with having no hair grease/oil

Lymphy Wed 27-Feb-19 20:58:33

I’ve not had it, but I have met many women who come to our clinic for contraception due to taking roaccutane, for reasons I’m sure you know. Every single one of them has found it fantastic.

Alienspaceship Wed 27-Feb-19 20:59:56

It didn’t work for me.

problem1234567 Wed 27-Feb-19 21:02:34

I am on it at present, started it in the New Year so about 2 months now.
I'm on a low dose - 20mg per day.
I haven't really had the terrible side effects I've read about.
My skin is a bit drier than normal but it's the winter and I've had two colds in the recent weeks.
I bought Carmex and Eight Hour Cream for my lips which was recommended everywhere but I can't see any difference from my regular pots of blue Vaseline.
Likewise I bought fancy moisturizers but can't say they seem any more effective than my Nivea Soft.
One thing I've been impressed with and enjoyed using is Origins Intensive Mask which I've left on overnight layered on top of a facial oil.
It may be that some people tolerate the side effects more than others or it's just a case of the mg per day making the difference.
Not had any cysts (which was my issue all around the chin area) whilst on it.
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.

Thecabbageassasin Wed 27-Feb-19 21:03:24

I took it in mid twenties as it looked like I wasn’t growing out of my teenage acne. This was after many other failed treatments.
Worked wonders.
Many years later I still don’t take for granted the feeling of having clear skin gives me.

TheLette Wed 27-Feb-19 21:25:22

Definitely worth it, it does the job. I was a student and luckily started taking the drug just before starting a backpacking trip to Central America which is incredibly humid. Initially had dry skin but the humidity soon sorted that out! So if you are booking anywhere for a holiday, my tip is to pick somewhere humid.

TheLovleyChebbyMcGee Wed 27-Feb-19 21:30:56

I did when I was about 15, now 37 and it did wonders for my skin!

But, several people have already mentioned this, use sunscreen. Doesn't have to be a pricey one, but make sure you use it even on cloudy days. I got burnt so badly it blistered across my cheeks and the skin has never quite recovered.

Molly333 Wed 27-Feb-19 21:38:02

My daughter is near the end of her treatment. Her skin is clear but when she went up to 60 mgrams she became very very anxious still is in fact, worrying but not normal worrying very abnormal thoughts . The consultant did a stress score and has repeated this then lowered the dose to 40 mg . I said to the consultant will this anxiety reduce and he said yes when the meds leave the system in 6 weeks ! . It has worried me and I have voiced this to the consultant who has been v good. My thoughts are be careful as the dose goes up but it has defi cleared the skin which was making her so low

Pickofthepops Wed 27-Feb-19 21:40:04

Took it in my late 20's when cystic acne on my neck made life hell, even after teenage acne & spots in 20's. sorted it for good for me. Horrible dry skin, lips. But worth it all. Persevere. Good luck x

Livingoncake Wed 27-Feb-19 21:49:20

I went on it when I was 19. It was a miracle cure. I remember i used products recommended by my dermatologist: Neutrogena Extra Gentle Cleanser for face, Dove sensitive bar for body. Unfortunately I can’t remember what moisturiser I used. Here in Australia, you can buy basic moisturisers by the litre from discount pharmacies, so presumably I used one of those. 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.

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!

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, 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!

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.

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!

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?

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.

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.

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!!

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!

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