Hi,
I’m waiting for an appointment to see a rheumatologist.
I’ve been having problems with sores and upsets in my mouth which my dentist is trying to help with but recently I’ve started with a swollen, painful tongue. Tonight it is really painful and feels huge in my mouth, it’s also scalloped tonight.
Can this be another lupus symptom?
Thanks
How strange I get that a lot, sometimes it’s my whole tongue & sometimes half of it. It normally happens at night & it’s really bad in the morning. I went to gp but they had no idea why. I read earlier it’s a problem with lupus patients but not a symptom of lupus ! How strange .
No sorry I don’t it just got to settle on it’s own. It feels so weird doesn’t it ? I can hardly talk when it happens & eating is difficult . It normally lasts a day with me but I do get often. I wish I had an answer for u x
This happens to me fairly regularly. I feel a bit of an itch on my tongue or lops and they start to swell. I've been allergy tested but I don't have any allergies. I carry antihistamines at all times and take one as son as the swelling starts. I've had to go to A&E a couple of times. The diagnosis was idiopathic urticaria as I often get welts on my torso, but now that I have more CTD symptoms I suspect it is related. Good luck.
I have had problems with this too. My tongue burns and looks swollen. I went to the rheumie to have some tests done and she took a look and said I had candida which you can get from taking prednisone, (I am taking that for PMR) so she gave me some prescription mouth wash to use. It didn't help and I can't see her again till late June. It comes and goes and it is very uncomfortable. I don't think it is candida because I don't think that would come and go randomly like this does. Wish I could give you some tips to help but as temarel said it settles on its own...but it also comes back. 
Hi Jacbar.
I have been experiencing this intermittently now for some time.
I don’t have a lupus diagnosis but it was initially thought this is what I had; however, the debate is still ongoing as I continue to experience many other ongoing symptoms! I have most recently been given a diagnosis of Behcets Syndrome/disease of which oral manifestations are a big part! I had a consultation with a Maxillofacial/Oral medicine specialist who arrived at this diagnosis. I am not suggesting this is what you have, just saying that it seems there can be a number of reasons for a swollen ,scalloped tongue. It seems GP’s all have differing opinions as to the cause. I have had ‘Menopausal symptoms’ (way past that now!) ‘Allergies’ (nothing specific showing) ‘Food intolerance’ (can happen with a certain food one day -no problem next time) Clenching teeth, thyroid problems, nutritional deficiencies and so it goes! I was wondering if you are experiencing any other symptoms besides the painful, scalloped tongue with swelling? And have you had any bloods/tests to rule out any specific cause?
Sue.x
Hi Sue,
I have a long list of symptoms with the mouth sores and tongue swelling being the newest manifestation. I’ve had numerous blood tests which ruled out an infectious disease and last week was referred to a rheumatologist but no idea how long it will take for that appointment!
I also have hashimotos and had my thyroid removed in 2011, endometriosis which I’m recovering from a laparoscopy to formally diagnose and severe restless leg syndrome. I am allergic to wheat so eat a gluten free diet and had bloods for coeliacs disease taken although this was ruled out over 10 years ago via a biopsy taken during colonoscopy.
My lupus like symptoms started to get worse around 2-3 years ago and the mouth thing started about 6 months ago
I have an emergency appointment at my dentist today to see if they can give me anything else to help.
I had betamethsone mouth wash and a sissy to numb my mouth but it only lasts a few minutes
Goodness me, Jacbar! Plenty to contend with, it seems..🙆🏼
How odd too, I note you have just had a laparoscopy for suspected endometriosis - I had stage 4 Endo’ and had to have a total hysterectomy. Since that time my health has been on a steady decline -gathering speed during the last 5 years. I blame the hormones! Or perhaps, lack of! 🤔
Isn’t it a job trying to get to the root cause of an ever increasing list of symptoms?
Hoping the dentist can help with relief, today at least. 🤞🏼
For the Behcets ulcers and mouth swelling I have been prescribed steroids which are helping to keep the symptoms at bay (rashes still appearing intermittently), amongst many others!
It appears getting a diagnosis is not an easy job...reading through the many posts on here. I suppose it depends how patients are prioritised within the NHS waiting list system - NHS give approx times and guidelines!
Sue. x
Along with a mass of other auto immune issues I have lichen planus which does that to my tongue and get white weals on inside of cheeks and when bad ulcers too....affects other parts too internally ....fortunately tongue doesn't swell....
I have had similar problems for years. I have found swishing often with warm salt water helps. Mine goes down my throat to my gland. The doctor prescribed a soothing mouthwash but it was too expensive so I made my own of equal parts Chloraseptic throat spray, Benadryl antihistamine and Maaolox for acid stomach. I’m in USA so I’m not sure you have same products but I’m sure you have similar. I Use the store brands which are more affordable. It numbs the pain -you don’t swallow it. I’m allergic to walnuts and that will bring on tongue sores - sometimes other foods will too, so it could be from a reaction. Hope this helps. Feel better.
Great idea for mouthwash! 🤗
So the dentist wasn’t much help. Suggested it may be stress related because I’m recovering from surgery.
She gave me difflam mouth wash. So I guess the wait it on to see if I get this appointment through for the rheumatologist
Hi Jacbar.
Was wondering if the Difflam had helped any? I found it aggravated my tongue and caused it to feel tingly and as if I had burnt it on hot food! That said, we all react differently to medications.
As for the stress, I imagine we all have a certain amount of stress when dealing with the unknown. I think it’s part of GP’s go-to diagnosis when unsure!
Sue.x
Hi Sue,
It helps for a few minutes but that’s it. I find it quite nippy when it’s in the mouth.
I’m just back from seeing my sleep medicine consultant who is amazing and looks at everything. Without her I wouldn’t have got anywhere with my endometriosis or the other symptoms.
She thinks it might not be lupus but IBD but says she isn’t sure. She knows the rheumy I’ve been referred to well and is going to consult with him.
She has given my 7 days worth of prednisolone 40mg to see if it helps.
And the wait continues
Jac x
Hi Jacbar ,
I'm not sure whether it will be any help or not, but we have an article on our website about mouth sores which has lots of advice and tips for coping with them - lupusuk.org.uk/coping-with-...
Thanks will give this a read 
I am having this same thing on and off for 1.5 years now. Also rash on my face that goes away for a week if I apply steeoid cream. Did you ever get a diagnosis or any information?
(Very) swollen neck gland
Swollen feet and ankles
Pictures of swollen fingers 
Swollen on lower legs, ankles and feet
Thin cracks on tongue
