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Roaccutane Severely damaged lips

Posted , 10 users are following.

adam43694
adam43694

**Extremely sore lips**

I have been on Roaccutane twice (April - October 2015 (40mg) & May - June 2016 (80mg)). I stopped taking the tablets In June 2016 for two reasons; my skin was clearing up and secondly because my lips were becoming unbearable with the pain that my dermatologist recommended. The problem started after I stopped my first cycle back in October 2015, the skin on my lips were more dry than usual and would easily fall off if they got damp but I was able to maintain them if I constantly moisturized and didn't bite them. As the months went on I noticed they were getting worse, the skin was weaker and more of it was coming off so I visited my Dermatologist who advised me to use Bepathen.  So I tried that and it didn't work so I tried different balms like beeswax and natural honey. I saw some improvements but if I took a shower skin would fall off and I would just go back to square one so I just started to ignore it and get on with my life.   When I noticed my acne was getting really bad in March this year, even worse than the first time I was prescribed In April 2015, I started taking roaccutane again and that's when my lips got severe.  My lips were already fragile so the tablets on top made my lips even worse; the skin is extremely raw with burning sensation that is unbearable at times. It's mainly in the center of my lips, top and bottom where the skin constantly peels off from the contact of water and food resulting in a weeping residue which then turns into a thin white layer over the lips.  No matter how gentle I apply balms the skin instantly comes off; it feels like the wound is deeper as if more layers of skin has come off.  I obviously made a stupid mistake by upping my dose from 40mg to 80mg without my dermatologists consent, I couldn't deal with the stress and anxiety that it caused me once before so I thought if I doubled the dosage it would heal quicker, which it seemed like it did but my lips paid the consequences.  So it's been 3 weeks since I stopped accutane and my lips still won't heal and I don't understand why nothing is working I tried many products; Hydrocortison 0.5%, clotrimazole 2.0%, Vaseline, beeswax, Honey etc.  My dermatologist assured me I don't have a fungal, bacteria infection or an allergic reaction but I know that this is not normal.  I would like to know if anyone has any suggestions with creams (steroid's) I should try with dietary recommendations?  I do eat well with a balanced diet and vitamin supplements but my immune system isn't the best. My lips are covered in Vaseline and Hydrocortison 0.5% so I can't take a photo right now - apologies.  I really need help, I feel so uncomfortable to leave my house as I suffer from anxiety. 

Thank you for reading,

A

1 like, 18 replies

18 Replies

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  • chloe09832
    chloe09832 adam43694

    Posted

    I come off roacctune about 2 months ago and my lips and skin were really bad, at some point I got a rash all over my body which I found out later was exzema. I used Vaseline for quite a while whilst on roacctune and my lips peeled constantly. I later asked my nurse and she told me that I should use a lip balm rather than a watery thing like Vaseline. I got a hard white lip balm which done the trip perfect! It stopped my lips from peeling and they were back to almost normal in no time! I would definitely recommend not using Vaseline and a harder lip balm!!!
    • adam43694
      adam43694 chloe09832

      Posted

      Hey Chloe!

      Thanks for you reply smile.  I have tried a few hard lip balms and my lips didn't react well to them,  maybe I haven't found the right one yet.  Which one did you use?

  • amber11762
    amber11762 adam43694

    Posted

    Hi Adam.

    I am in my 4th month on Accutane and my lips are awful too, so painful an everyone says it looks like a whole layer had come off. They're always bright read and peeling and on the corners they split and the skin around my lips has peeled off (imagine the girls version of the joker)

    I've tried EVERYTHING and so far the only thing that works for me is using LOADS of Blistex, intensive moisturiser the plain one not the cherry one when I go to bed in the night and when I'm getting ready in the morning I put more on. Then after about an hour I rub it off and then throughout the day I use the neutrogena lil balm stick. So far this is working ok. After I eat lunch I find my lips go back to how they were and I have to smother them but at the moment this is the best thing I've tried for them.

    Hope this helps!

    • adam43694
      adam43694 amber11762

      Posted

      Hey Amber!

      Thank you so much for replying I really appriecate it.  Blistex lip balms have always been a favourite of mine when I was first on roaccutane especially the MediPlus balm.  However, when my lips got worse the second time I noticed the blistex wasn't helping the with pain or skin regeneration.  Another problem with the Lip relief cream is white build up it would make.  Of course If i leave the house I need to wipe it, if I wipe it the skin would fall off.  I think I need something that's stronger sad.  I may try the neutrogena thought smile

    • amber11762
      amber11762 adam43694

      Posted

      No problem! Yeah that why I wipe it off too!!

      Gave you tried Eucerin lip repair?? That good for skin regeneration! I loved that but gave run out and need to get a new one asap

      Hope it gets easier for you sad Accutane is hell

    • adam43694
      adam43694 amber11762

      Posted

      I haven't tried Eucerin lip repair, I heard aquaphor is really good but I haven't tried that either.  

      Thanks! Accutane is hell and heavy on the system - but it works rolleyes

    • adam43694
      adam43694

      Posted

      This only made my lips even worse.  I think I'm allergic to lanolin.

    • adam43694
      adam43694 amber11762

      Posted

      I have tried that also, the lanolin makes my lips peel more this is why I think maybe it is an infection.
  • amber11762
    amber11762 adam43694

    Posted

    Aquaphor is the American Eucerin sorry! You should try it, it's great for skin regeneration!

    It's is!! I can see a huge difference in my skin I'm so happy

    • adam43694
      adam43694 amber11762

      Posted

      I actually found it to make my lips blister and peel more,  I think it's the lanolin that irritates my skin. sad

  • ali81557
    ali81557 adam43694

    Posted

    Try using any of the balms that come in kits for use after a lip mask. Mary Kat used to make one, not sure if they still do. I currently use skin logics lip appeal. I had fat injected into my lips 17 years ago and since then I have suffered from dry cracking lips )a full layer peels off every other day). I use this balm and like it. You have to buy the mask with it (as bottles are attached), but it's worth it. Another trick is to buy vitamin E

    Capsules, and poke the capsule with a pin to squirt out the liquid. They might even sell liquid Vitamin E. Good luck with your problem!

  • dana67298
    dana67298 adam43694

    Posted

    Last week I was in the same situation as you, I am currently on Roaccutane and had tried absolutely everything. I had tried everything from ALL lip balms, bepanthen, Hydrocortisone 1% and none of them worked, all left my lips bleeding, cracking and constantly peeling off completely. I had also noticed that the more water I drank the worse my lips were. I went to the chemist last week pretty upset as I work in customer service and was very self conscious of talking to customers while my lips were like that. He explained to me that while for most people, generic balms work well, for some the water element in generic balms can further irritate the lips, this even applies to Vaseline believe it or not, he suggested that the oiler the product, the better the results should be, as the product would protect and waterproof the lips. I explained I had already tried Vassline, which is when he recommended this product. The product is called 'Wool Fat' and it's literally as it sounds, it's the fat off the wool of sheep (which sounds disgusting I know) but at this point I was willing to try anything I was in so much pain. As a follow up, the second I put it on it was the most relief I'd had all year, I've been using it religiously for a few weeks now and my lips are completely healed and looking normal again! Please consider giving this a try if you've run out of options, it worked so well for me that I wanted to share it with fellow Roaccutaine users as I know what it's like to live with constant peeling, bleeding and pain! Good luck!

  • dom13067
    dom13067 adam43694

    Posted

    Hi, I have a very simlar tale to yours. I notice this was 9 months ago... have you made any progress?

    Cheers. 

  • jake70448
    jake70448 adam43694

    Posted

    Hey I have been having this almost exact same issue with my lips for the past 2 years that all started from accurate too. I’ve tried several different oitments and such and most of all typical store bought lip creams. Did you ever figure out how to fix the problem??
    • anne99268
      anne99268 jake70448

      Posted

      I replied to you in main thread ... Meant to reply here, sorry!
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