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Peeling of the lips and sore mouth and tongue

Posted , 7 users are following.

Sis0308
Sis0308

I have a disease called Bechet's which requires taking predinsone for a period of time or bursts of predisone depending if I have a flare up with Bechet's. When I tapered off of predisone and I am done taking it after a few days my lips inside and out get raw and sore with white blisters forming and crack and bleed and start to peel it is miserable and would not wish it on anyone. I cannot even eat or drink during this time it just burns and very painful. I apply topical of various ointments and lip balm to get me through it which lasts up to 3-4 weeks. Has anyone ever have this problem coming of off predinsone? I am to the point taking predisone and tapering off of it and finished with it is not worth it anymore. Thank You

1 like, 13 replies

13 Replies

  • KajuKatri
    KajuKatri Sis0308

    Posted

    I also have this peeling off lips problem but I use only lipbam. I avoid the use of topical steroids after I came across its side effects

     

    • Sis0308
      Sis0308 KajuKatri

      Posted

      Thank you! I am on every lip balm out there in the market and nothing seems to help at this point. I finally broke down and started putting neosporin on the lips and inside of the lip so we shall see. Thanks again!
  • EileenH
    EileenH Sis0308

    Posted

    Is it due to stopping the pred - or is that coincidence that you are just finishing a course of pred when thrush establishes itself? Or possibly it is allowing your personal version of cold sores to emerge? 

    Have you spoken to your doctor about it?

    • Sis0308
      Sis0308 EileenH

      Posted

      Hello!

      Thank you for your advise, yes it is when I stop taking predisone within a few days I start noticing it coming on. I have every lip balm on the market and nothing helps, so I am putting neosporin now on the lips and inside of the lip. It is horrible splitting and pain it normally takes a few weeks for the lips to heal up. I have talked to my doctor about it and they say they have never heard of anything like this happening to anyone. I do get thrush sometimes taking predisone but it is inside the mouth and throat. Thank you! 

    • EileenH
      EileenH Sis0308

      Posted

      I had similar symptoms to what you describe many years ago - when my baby had thrush. I took her and me to the doctor who said he'd never seen anything like it and no it couldn't be thrush. When I finally got home to Germany and saw my own doctor he recognised it straight away. I agree with everything Janet has said.

  • JanetGarrett
    JanetGarrett Sis0308

    Posted

    @Sis0308

    I'm not sure if this is exactly the same but very close. I was diagnosed with PMR and October 2017 within a month I had bronchitis and pneumonia so was placed in addition to the prednisone 15 mg on an oral steroid inhaler. The combination of the two tipped me over the edge for thrush and Nyaststin (gargle) was prescribed four times a day. I also learned that everything we use when we have active case like this chapstick lipstick toothbrush needs to be thrown out or sterilized. My lips tend to be very dry on this prednisone and I used some of the best lip bombs like CarMax and the best O'keeffe's Lip Repair which are just struggling at this point. There is also a dermatitis associated with the prednisone that comes around the mouth and lips and Chin for which a prescription ointment is the only long-term treatment. I hope some of this might be helpful.

    Janet

    • Sis0308
      Sis0308 JanetGarrett

      Posted

      Thank you Janet!

      I also use Nystatin, and then crush down Sucralfate 100 mg tablets with a small amount of water and make a paste and apply it to my lips and inside lip sometimes this does help. I use O'Keeffe's lip repair, Chapstick, Aquaphor lip repair but when the lips are flared up none of this help. I will throw away my toothbrush and get another one. I also use neopsorin ointment on the lips. Thank you for your advise and I hope you get to feeling better! 

    • JanetGarrett
      JanetGarrett Sis0308

      Posted

      @Sis0308 You can also run your toothbrush through the dishwasher. I also use an electric toothbrush. I take the head off and soak it in mouthwash each day~ anything I can do to minimize transference. Prior to PMR in prednisone I had found the O'Keefe's and it was wonderful. Google prednisone induced dermatitis. If that's what you have only the ointment which includes the lips will kill its growth. Best of luck.

  • Guest
    Guest Sis0308

    Posted

    I don't know if this is helpful or not. I had the same thing swelling, redness at the corners of my mouth that would then turn white and peel. Very painful unable to talk or eat solid food. I noticed this usually happened a few days before my cycle. I asked my gynecologist to place me on Birth control and have not had any recurrences. It was just a band aid for my condition, but so nice to not have that pain!

    • Sis0308
      Sis0308 Guest

      Posted

      Hello

      Thank you for the info. and I hope you do not have anymore problems. I am down to 3 mg. of predinsone daily and have not had any peeling of the lips or blistering so far. I plan to get off of predinsone soon and hope I do not have to go back on it but I have my doubts because of my illness. I had cataract surgery last month which was from being on predinsone on and off for a few years. Take care

  • melody63164
    melody63164 Sis0308

    Posted

    i am on prednisone. 20mg for 3weeks..now my lips tongue and some of my mouth is burning terribly..i cut my dose in half but wonder if i should quit outright or taper slowly

    down..any ideas about what to do for the pain would be greatly appreciated..

    thanks melody...

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • melody63164
    melody63164 Sis0308

    Posted

    i am on prednisone...my lips. my mouth and tongue all sting making it difficult to eat or drink..what can i do?
    • Sis0308
      Sis0308 melody63164

      Posted

      Hello!

      Sorry to hear that you're having issues with stinging of the mouth, lips and drinking. I used Carmex, Chapstick, Aquaphor lip ointments, as far as the mouth I rinsed with Nystatin Mouthwash prescrption you could have thrush in your mouth from the prednisone which is common and I brushed my teeth with Tom's toothpaste, It did help but it usually takes around 3 weeks for the lips to start to heal. Hope this helps Sis308

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