Mycophenalate and sore swollen lips!

Hey everyone. Bit of a random thing. I have been on mycophenolate for a few months, been working well but I keep getting really sore lips so using lip balm and Vaseline etc, woke up this morning and it's like they are burnt! So so sore. Went to the gp and she said it looks like dermatitis but didn't give me anything and said speak to my lupus nurse as it could be a side effect from the myco, in so much pain! Has anyone else had this? Think I might just put a bit of hydrocortisone on them! :(

Thank you

Jo

8 Replies

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  • No, I haven't experienced this. It must be so painful but I wouldn't put hydrocortisone cream on lips, the skin is so sensitive, it could go worse.

  • Thanks purpletop. Oh ok won't use that then. Just realised I used a new mouthwash the last few days, wondering if it could be that, feel burnt! Will soon see what happens after I stop using it. :)

  • You'll probably need to reduce the dose, just speak to the lupus nurse about trialling a reduction for 1 month to see if it makes a difference. Better than let this get too bad that you need to be moved onto a different drug.

  • I do tend to get an inflammed mouth (verything: lips, + tissues in the mouth) when i'm flaring.

    I agree with Purpletop. On Monday I saw my specialist lupus nurse or my first long myco monitoring appt in clinic. (i'm on 1000mg, which is now considered my therapeutic ose). And I had a long chat with another lupus friend who was in for her myco appt. we've both been on myco for months, and the way we're reacting to myco is very individualistic...the SLN was totally open to seriously considering the problematic aspect of my reaction to myco. I'd like to think your rheumatology clinic is too.

    And i totally agree with you: Do be vvvvv cautious about new oral care products. Try stopping the new mouthwash & see how you are, etc. My mouth inflammation has flared due to these ort of products at times

    Good luck

  • Hi Barnclown

    I can recommend Difflam Oral Rinse for mouth inflammation. It works a treat. You can get it on prescription or buy it over the counter but it's quite expensive!. Take Care X

  • Thanks!!! I didn't realise i could get it on prescrip: great tip! Will ask my gp..... i only just learned about diflam this week, and now it's on my shopping list...got to give it a trial.....I feel so reassured every time I discover a decent new product...this is one of the lovely things about being older...to me, there seems to be more on offer - more that can really help us...

  • Thanks everyone. Think it was the mouth wash :) much better today! Will keep an eye on it!

    Jo xx

  • I take Betnesol mouth wash it is a mild localised steroid on prescription and it really makes a difference :)

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