Hi, I have a friend with GCA from another site. She was diagnosed in October 2023. Currently onn10 mg. Prednisone.
She called this morning saying that the side of her tongue has a red spot that is sensitive to the touch. I don’t know much about when GCA hits the tongue. Does she need to go straight to the hospital? Or up her prednisone?
I've certainly had sore places on the side of my tongue that were nothing to do with GCA. By no means everything is due to GCA and that isn't really the tyical sort of thing that would suggest it is.
I know mouth sores are fairly common on Actemra. She isn’t on it. She says she never gets canker sores. I don’t want her yo end up with tongue necrosis.
There are related posts now you have asked..
She should arrange to see a dentist as it could be related to oral inflammation or even caused by her tongue being more tender and being caught by her teeth at night.If it isn't dental there could be vitamin deficiency causes for an inflamed tongue or red spots. Vitamin D deficiency, Anaemia , and Vitamin B 12 or Folates deficiency can happen when taking steroids, especially if you are also on a PPI or take regular antacids and are common causes of tongue symptoms. Therefore the next stop would be an appointment with the GP and a request for some blood tests.
In the meantime , drinking more water , taking the standard dose through the day of paracetamol and not eating sugary or spicy food will help give relief.
Gargling and swilling the mouth regularly with cool or Luke warm unsweetened green tea will relieve the pain too, as can eating unsweetened probiotic natural yoghurt as we can also be more at risk of oral thrush while taking higher doses of steroids.
Thank you!
I’m on Prednisolone and frequently get red sore spots on one side of my tongue. Mine is caused I think by chewing my tongue in my sleep. Have even woken myself up by my jaw loudly snapping shut. It happened last time I was on Pred as well but don’t know if that is the cause.
Just to add, I have almost bitten right through it in the past while asleep.
Oh goodness! That sounds awful!
Thank you!
A friend on mine with a GCA diagnosis has admitted to me that he is using vapes for comfort as he feels so rotten and anxious . I think symptoms such as a sore tongue and nausea are making him feel worse. Has anyone read anything saying that it is harmful to people with our conditions. He was a life long smoker and doesn’t want to be driven back to the habit.
As vaping hasn’t been around that long, doubt many, if any studies have been done for our illnesses … there don’t seem to be many on tobacco smoking and GCA - this seems to be main one when you do a search -
pubmed.ncbi.nlm.nih.gov/300...
However there is concern in vaping and oral issues - including loss of taste and vape tongue - whether they are more or less serious than smoking who knows …
Never mind with GCA - they aren't the fantastic answer they are portrayed as being. It is less dangerous than tobacco but it is still bad for your lungs and there is evidence it affects the cardiovascular system immune system - which is worst for young users but also affects adults.
hopkinsmedicine.org/health/...
heartandstroke.ca/articles/....
bhf.org.uk/informationsuppo...
Has he not sought smoking cessation advice from his GP practice? It is one of the things they are really hot on so he should ask at least.
Thanks. He wasn’t sure that cessation advice applied to vaping. Thanks both.
The thing about vaping is it is still the nicotine addiction which is possibly the hardest bit to break. They can only say no - but it is becoming obvious that vaping isn't a nice benign way to stop smoking tobacco. Vile habit - and interestingly, here in Italy I am seeing fewer and fewer people blowing their clouds of whatever it is. Which is a good thing if you ask me!
Sore mouth and tongue with GCA
PMR & GCA - prednisone and breathlessness 
Changing Rheumatologist and pressure changes during a flight.
Prednisolone and red cheeks and taking hot flushes
