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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

Lucindille Wed 27-Feb-19 14:21:21

My daughter was on Roaccutane for a year when she was a teenager.

It worked wonders for her when nothing else had - her skin is completely clear now and it even seemed to get rid of most of the scarring. She’s now 25 and hasn’t had any major acne in almost 10 years.

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.

Bodear Wed 27-Feb-19 14:25:15

I’m on it and it’s honestly changed my life. I keep pots/ tubes of lip balm everywhere (desk/ car/ handbags/ bedside table/ etc) and find that Vaseline does the job.
Good luck!

Mari50 Wed 27-Feb-19 14:25:26

Yes. I took it when I was 34 for hormonal cystic acne after several courses of topical and systemic antibiotics that worked when I was taking them but the acne always returned. It was very effective, my skin has been clear since then.
Side effects were tolerable although I do have thinner skin now as a result, my décolletage definitely suffered. Would I take it again? -absolutely.
Is it a scary drug that requires a lot of thought prior to taking it- yes.

Bodear Wed 27-Feb-19 14:25:29

Oh and eye drops once or twice a day

desperatesux Wed 27-Feb-19 14:28:24

My friend is a consultant dermatologist and thinks it too is a wonder drug. Works v well most of the time and the side effects are overplayed. I have known people who have used it and the difference is miraculous but their skin was v v bad, think cystic acne

MrsMcW Wed 27-Feb-19 14:30:03

I was on it as a teenager. Worked miracles on my skin, but yes, watch out for very dry lips. I 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 used to get a lot of nosebleeds in cold weather too, from nasal passages drying out. Not a lot you can do about those, just make sure you always carry tissues.

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!

Good luck. The benefits hugely outweigh the downsides, I have no regrets at all.

TwinkleTits70 Wed 27-Feb-19 14:34:57

Similar age to you when I had it. Definitely worth it, but it does, as you know, have major side effects. For me, not much helped with the dry skin, it was coming off in sheets. However another side effect of that is I now look a good ten years younger. Wear sunscreen daily (even if cloudy) and use a basic, non perfumed face cream to try to relieve the tightness.

Be prepared for joint pain too, it really does dry out everything.You may need to have some lube on standby for intercourse as well.

HollySwift Wed 27-Feb-19 14:45:03

I had 2 rounds of roaccutane in my teens. I needed a lot of Vaseline but no other side effects. It was incredible and although I still get period spots and have scars I’m so grateful for it. I had horrendous acne over my chest, back and face. All gone within a year!

Excited101 Wed 27-Feb-19 14:45:36

Yup! Brilliant stuff!

Curlyhairedbrummie Wed 27-Feb-19 14:46:00

I was on it in my mid twenties after suffering awful acne for years. I had tried everything the GP could offer and eventually was referred to dermatology.
I so wish I could have gone sooner as it was the best thing I ever did. I was on it for 3 months and literally after 2 weeks of taking it my skin was clear. And it has remained so ever since!
I suffered with dry skin but normal hand cream worked and I did have a few nose bleeds due to the dry skin in my nose, but nothing I couldn't manage.
There have been stories about people suffering with poor mental health while on it and also I had to do monthly pregnancy tests as apparently its extremely harmful do a developing feotus.
Good luck!

parietal Wed 27-Feb-19 14:46:19

i took it as a teenager. marvellous benefits and no noticeable side effects.

Magenta82 Wed 27-Feb-19 14:49:39

I took it about 20 years ago for Hidradenitis Suppurativa, it didn't help me but you would be taking it for a different condition so will probably have more luck.

The side effects were not an awful lot of fun. My skin was really dry and cracked, it bled, and a lot more of my hair fell out than was usual for me, I remember pulling clumps out of my hairbrush.

I also had really bad mood swings, although I was a teenager at the time so that may have played a factor.

Whatever you do make sure you use at least 2 reliable types of contraception, both before starting and for a long time after (I think it is a year or something) it can cause birth defects and lasts in your system for a long time.

U2HasTheEdge Wed 27-Feb-19 14:51:40

I am on It right now.

12th week I think.

It has not been as bad as I thought but still a bit of a pain.

My side effects are: Dry corner of eyes which scab. Patches of eczema over my body, dry scabby nose, itchy skin, thin skin that cuts easily. The lips are horrible at times . I also have been suffering with my back even more than usual. No one knows if it is the roaccutane, the statins I needed to take to go on it or if it is just a flare up of my normal back problems.

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. Never wax anything, I know somebody who did and took a whole strip of skin off her eyebrows.

My hair has never looked better! It never gets greasy and I only have to wash it due to it picking up smells.

The side effects are annoying but I wish I did it years ago. My acne was mild but persistent since I was a teen. My skin is looking the best it ever has.

AGHHHH Wed 27-Feb-19 15:05:10

I'm on it for the second time.

First time around the only side effects were dry lips and sensitive skin.

This time I have those side effects again but my dose is higher so I also feel lower in mood, my joints are stiff and it doesn't take much for me to wake up aching the day after. My vision is also slightly blurry at times, especially when tired or at night. A few annoying side effects and I can't wait to be finished but nothing awful so far, I'm nearly at the end!

AGHHHH Wed 27-Feb-19 15:07:03

Oh also it worked perfectly for me, all acne gone. Hopefully this time for more than a year ...

Mari50 Wed 27-Feb-19 15:25:17

My friend is a consultant dermatologist and thinks it too is a wonder drug. Works v well most of the time and the side effects are overplayed.
I’m not sure the two young men I have met through the course of my work who are blind as a result of taking roaccutane would agree.

QuirkyQuark Wed 27-Feb-19 15:26:11

I've been on it and I'd take it again if needed. My skin was unbelievably painful with cysts and boil type spots everywhere, it all went.

My liver had a couple of wobbles and my cholesterol went up, skin was paper thin as were my lips, I used original Carmex in a tube for them, the medicated smelling one. I have inflammatory arthritis and I definitely noticed an increase in joint pain but as I said above, I'd take it again, I keep getting little niggles so I imagine I'll need another round at some point in the future.

Girlinthegarden Wed 27-Feb-19 15:26:38

I was as a young woman living overseas. God, my skin was great. I didn't get dry skin but did burn from the tiniest bit of sun

CurbsideProphet Wed 27-Feb-19 15:28:58

I've taken it. My dermatologist recommended a much lower dose over a longer period, so I didn't experience any of the reported side effects. It was life changing, as I had terrible cystic acne at the time and was utterly miserable. I still get a couple of spots around my period, but they go very quickly.

Tucobenedicto Wed 27-Feb-19 16:00:56

I used this about 25 years ago..before I used it the doctor said that I would find a heavy increase in spots to start with...boy she wasn't wrong..every morning I woke up I was covered in spots ..it looked horrific...it did help me a bit but not as much as others are saying here...best of luck.

treenuts Wed 27-Feb-19 16:53:23

I took it twice. First time was mostly a breeze, dry lips and very dry skin (which my GP prescribed an emollient shower gel for, which really took the edge off).

A year later, as my skin still hadn't fully cleared up, I took it again. It was awful. The most terrible month of dry skin and lips, combined with unbearable aches in my joints every day and a fatigue I've never experienced before. I was basically bed-bound, barely able to move.

Overall, I think it's worth a shot, you never know until you try. If you do have horrible side effects though, consider whether it is worth it to you to continue.

MiGi777 Wed 27-Feb-19 17:12:09

I took it for 12 weeks in my 20s and it changed my life too. My skin has been brilliant ever since. I did have very dry skin with it. On my arms and lips especially. That was uncomfortable but I used E45 and Vaseline for my lips. 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. Nothing negative to say about it!! 😃

MiGi777 Wed 27-Feb-19 17:14:10

Yes, you have to keep out of the sun too! I forgot about that bit!!!!

mightypinkdms Wed 27-Feb-19 17:19:28

Another success story here, started it late twenties I think... had acne from adolescence, and for me was a miracle. I do still get some spots, but honestly it’s been brilliant and wouldn’t hesitate to do it again if I had to. Nose was dry and bled, and no oily products allowed on skin - so all make up now oil free. Wish I had had the option sooner...

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