Roaccutane – spiralling out of control

After suffering from acne since I was 12, Roaccutane was a miracle cure for me. I’d been so afraid to go on it, there are so many scare stories and it seemed like such a big deal, but in the end there was nowhere else to go if I ever wanted to get rid of my acne.

And it worked. Almost immediately. My face, my back, my chest, they all cleared. I looked like a different person. And I had none of the scary side effects. Why didn’t I do it years ago? Why did I wait until my looks were fading into middle age to get rid of the spots which have meant I have never in my life looked as good as I might have done?

PicMonkey acneCollage, Roaccutane

Top left – March 2014 before treatment, Bottom left – June 2014 – looking a bit better on a different treatment, Top right – September 2014 – looking good on Roaccutane, Bottom right – Boxing Day 2014 – first few spots return

Then, just before Christmas, something happened. I got a couple of spots on my forehead. I was gutted.

Then I got more spots and more spots. I got a nasty eye infection.

It felt like I was falling apart and I looked awful.

My GP advised I come off the Roaccutane until my spots and the blepharitis in my eyes had calmed down. It seemed kind of ironic to come off the thing that is supposed to be making my acne better, because it had made it worse. But I had to do something.

PicMonkey acne2Collage, Acne, Rosacea, Dermatologist, Roaccutane

Top left – 11th February, Top right – 18th February, Bottom photos – 23rd February

 

And still it got worse. I asked for an appointment with the dermatologist and was told I could have one in three weeks. Three weeks! My face might be completely invisible by them – covered in one giant spot. When you first go on Roaccutane, you’re so well supported. It has so many side effects that you keep having check-ups. I was led to believe I could always call the dermatologist and get an appointment when I needed one. I didn’t need them at first, when I kept having them. Now I REALLY needed one.

And still it got worse. Half my forehead was a giant spot. The top of my nose was so swollen it was changing the shape of my eyes. Every time I looked in the mirror, something had changed. And by changed I mean GOT WORSE. I hated looking in the mirror, yet I couldn’t drag myself away. It was a horror show right in front of my eyes. A horror show on my own face.

I have never hidden myself away because of my acne. I’ve never felt embarrassed. It is what it is. It’s not there because I’m a bad person or I’m dirty or anything else, it’s just bad luck.

But for the first time in my life, I wanted to hide away. The kids were going back to school after half-term and I was going to have to face people I knew. They were going to stare at me or try not to stare at me, they were going to talk to each other and wonder what was wrong with my face. And I didn’t want that.

I wanted it gone. But how to make it go? What if it never went? What if it scarred? (I’ve never had scars, thank goodness.)

Everyone said it – I had to see the dermatologist. But the dermatologist had said I had to wait three weeks.

And then he backed down. I think it was the words ‘I’m scared to go out and see people,’ that did it. I got an appointment for the next day.

Author: Sarah Mummy

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24 Comments

  1. Oh sweetheart, that looks so painful and sore, and yes I can see why you just wouldn’t want to deal with everyone else’s reactions to the acne when you’re so sore yourself. Let me know what happened?

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    • Thank you! It is painful. I have some strong antibiotics now and I still look horrible, but I can see it’s improving!

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  2. Oh Sarah, that looks so uncomfortable! I’m shocked by the lack of support but glad you persevered. What is the treatment now? I developed adult acne after having a mirena coil fitted and it destroyed my confidence. I wouldn’t go near my hubby and couldn’t look people in the eye. I got it removed but the acne stayed for over four years! It’s only since having my baby that it’s got better on its own. I truly hope you get somewhere where this. I spent so much money on creams and treatments. In any case hold your head high, I see the person not the marks x

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    • Thanks very much. There was too much support at the start, but it wasn’t there when I actually needed it! Incredible that the coil could have had that effect on you for so long. Luckily my confidence has never been hit before now because I’ve always had it, but this has taken it to a whole new level 🙁
      That’s a lovely thing to say. x

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  3. Poor you, I really sympathise but don’t despair. My brother had similar issues for years with Psoriasis; he would be given a new cream or drug which worked for a while then seemed to exacerbate the condition. The extremity of his Psoriasis fascinated the doctors who took photographs for their medical journals but no one seemed to appreciate the emotional aspect of facing the world with badly affected skin. Luckily two years ago he started a brand new treatment which really has transformed his skin and his life. There is no reason why he shouldn’t be able to continue with this indefinitely.
    I hope your luck changes very soon. In the meantime remember that people who judge you by your outward appearance are very shallow indeed, stay strong.

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    • Thanks very much for commenting. That must have been so hard for your brother. Being a medical oddity is not something most people want! It’s good to know that he’s finally found a treatment that works.
      You’re right about people who judge. I don’t think many people would think too badly of me, but I hate them even looking at me and wondering what’s wrong 🙁

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  4. I’m so glad that you finally got an appointment – how awful that the support had all gone. I really hope that they find something to cure it. The difference in that picture top right to now is incredible. Obviously it can happen. Keep hanging in there. I admire you so much.

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    • Thank you! What a lovely thing to say.
      It’s incredible how quickly it went downhill and sad that I know it will never be perfect again. I guess I’ll have to settle for mild acne for the rest of my life! 🙁

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    • Thanks very much! I’ve got some strong antibiotics, which are nasty, but they seem to be helping. x

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  5. Oh Sarah, you have my every sympathy, and then some. I remember when my rosacea kicked off and my face was just one big red mess, with my nose looking like a witch from a cartoon. I just wanted to crawl into a hole and not come out. I really hope the dermatologist helped and that you get something that can sort if for you once and for all. Here is one benefit of France – I got to see the dermatologist as and when I wanted to, and I was prescribed some good creams/potions/meds which cleared it up beautifully. I really really hope this is the turnaround for you x

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    • Thanks very much. It sounds horrendous what you went through.
      I have got something to make it better, but whether it will make it perfect again, I doubt it! Would be nice to have easy access to a dermatologist.

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  6. Oh Sarah, I can’t believe how bad this is. I’m relieved that you’ve been offered an appointment and hope that they can sort out your problems as soon as possible. Good luck x

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    • Thanks very much! I’ve got some nasty antibiotics, they’re not a miracle cure, but it looks like they’re going to help.

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  7. Good luck hun, I hope they can give you something very quickly tomorrow. My hubby’s eczema got infected last year and he had a similar reaction to yours. They have him something very strong that worked quickly and I hope it’s the same thing for you cxx you are gorgeous Sarah, even with the acne xx

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    • Thanks very much, that’s such a lovely thing to say!
      It’s good to hear your husband’s was sorted so quickly, I always think it takes two to three months to make a change, but I think I’ve got particularly strong medication which should work faster. x

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  8. Oh hon this is just awful, and after it was going so well too. Sending hugs and good vibes, really hope the dermatologist has a magic cure for you lovely xx

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    • Thanks very much! It is such a disappointment after it was working well. x

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  9. Oh gosh! That looks so sore….Good luck! I hope you get something which helps soon x

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    • Thanks very much! I’ve got some nasty antibiotics which seem to be doing the trick! x

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  10. Oh lovely that does look sore! Hope they can sort it out for you asap. That said, you’re a beautiful lady. Big hugs. X

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    • Thanks very much, that’s such a lovely thing to say! x

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  11. Horrible that you’ve had to fight for the support that you were promised and daft that they provide it when it’s not needed, but not so keen when it is. x

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  12. Hang in there. This has been the only blog where I have found someone with my same problem. My forehead, chin and one cheek looks like that! Let me know what you find out!

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