Anyone experienced flare ups on mouth ulsers,swollon lips(inside) and sore tongue??

Hi i have aps and test possitive for lupus and have had this flare up twice since diagnosis and im wondering if anyone has any advise for me please. I have also had a headache on and off since friday and just feel rubbish😔 been to see GP and he said he thought it was a virus. My inr is high at the mo so i eat some greens last night so hoping it will fall. I self test so manage it at home.

Many thanks in advance

10 Replies

  • Hi gemgemz, I had mouth ulcers and sores constantly. My tongue also gets sores. Have APS. The only thing that helps these for me is an antiviral, acyclovir. Those sores used to drive me crazy.

    I also have chronic daily headaches since childhood. Aspirin does help--approved by doctor. Hoping a higher INR might decrease headaches but don't know yet if this will work.

    Good luck, Nancy

  • Thank u Nancy for your msg and advise!!! 😊 xxx

  • I don't know if mouth ulcers are very common with Lupus, I did get them quite a lot when my thyroid was low but seem less so now it is controlled. Also Bechets is something that has very similar crossover symptoms to Hughes but ulcers are a common symptom of Bechets. You can also get the ulcers in other body parts and if you are a woman then vulva ulcers are common.

    Of course when you have an autoimmune disease or two and you get infections, virus or a bit run down, something like mouth ulcers could be something that will increase rather than be a sign of an underlying new disease.

  • Hi gemgemz, I too have lupus and hughes and have mouth ulcers almost always. And same with headaches. It's cyclic for me....headaches and then they will abate then gastritis then that settles then athritic and muscular pains then the cycle starts over.

    Not fun is it 🙄

    All the best


  • There are many viruses that can cause mouth sores. Some viruses can be treated, others just have to be waited through. You should bring this up with your doctor to check and see if you have a virus.

  • Mouth ulcers and also ulcers in other places can be a feature of Lupus. I once had a ulcer that stretched from one side of my gum right around to the other side, this was when I was a teenager, not since though. My daughter had the same and ulcers elsewhere. However it his is ongoing including the swelling, it is important to check in with GP or consultant, maybe some blood test etc? MaryF

  • Hi I'm sorry yo hear ur not feeling well! I've had a burning, sore tongue on and off for over a year now! It comes and goes usually, but now it seems to be here for good! I've gone to dentist and oral surgeon and they know it's a real problem, but don't yet know what causes it or how to treat it! The oral surgeon wanted to recommend me to a pathologist in dentistry, but can't afford that now! My lip and my tongue very sore and do have mouth sores! I have APS and Sjogrens too! I wish y'all well and hope u can find some relief cuz it's painful! GODSPEED

  • Those symptoms can be attributed to Lupus and also Sjögren's do u have them? X

  • Thank u for all your replys and sorry it took me so long to internet has been playing up. Thanks u all very much..your comments r very much appreciated xxx

  • Yes I have Sjogrens! Now I know I have Neuralgia! Extreme facial pain! Horrible! I want to be Rumplestillskin and sleep for a long time!!! Lol...

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