Mycophenalate and sore swollen lips! : Hey everyone... - LUPUS UK


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Mycophenalate and sore swollen lips!

joannebond360 profile image
8 Replies

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


8 Replies
Purpletop profile image

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.

joannebond360 profile image
joannebond360 in reply to Purpletop

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. :)

Purpletop profile image
Purpletop in reply to joannebond360

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.

Barnclown profile image

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

misty14 profile image
misty14 in reply to Barnclown

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

Barnclown profile image
Barnclown in reply to misty14

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 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 me, there seems to be more on offer - more that can really help us...

joannebond360 profile image

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

Jo xx

MargaretGail profile image

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

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