Mouth issues - Lupus

[Staceylouise90]

Hello,

Just wondering if anyone has any mouth/tongue issues with any autoimmune issues.

Last few months my mouth is dry/ sore feels like a sore throat occasionally but it’s mainly irritated a lot of the time, my tongue I originally thought was thrush, I’ve tried treatment from the doctoes along side antibiotics for continuous sore throat.

My tongue is very sore / burning sensation when I eat and drink - looks red in patches along side my throat, which I struggle to swollow dry foods and always have a dry mouth and lesions inside my mouth also.

I am awaiting to trial hydrocloxcine for my symptoms for SLE and should get a call this week from rheumatology and will voice my concerns just wondering is anyone has any advice, I did look online and it came up with Sjogren’s Syndrome has anyone got SLE And this?

Any help would be greatly appreciated

[Stacy123456]

I have SLE and always get mouth issues.. Ulcers now and again but mines is mainly blocked saliva glands which can be pretty painful.. I was referred months back for an appointment but haven't heard anything about an app yet and was given a spray to spray in mouth that's like saliva... I also have been having an issue where my I always have the feeling of a lump in my throat the feeling u get when ur watching a sad movie but its constant.. Its starting to drive me insane but I don't want to bother my doctors practice at these uncertain times x

[Boudica1]

Have you tried Bioten toothpaste and mouth wash?

I have Sjogren's and can really suffer from dry and sore mouth and throat among a multitude of other things being dry.

Also it may be an idea to ask who is treating you to check out your b12 levels along with the folate if they come back normal talk to your dentist as well once they are back to normal work.

I do understand what the dryness problems can be and it's not a good thing to be suffering from.

Try the Bioten products and there are other things that you can get to help and also drink plenty of water. I have to day and night.

Don't forget you can also possibly have Sjogren's as well as SLE as Sjogren's is called the little sister of Lupus.

Please don't worry too much about it easier said than done I know but there are things out there that you can use.

Just talk to your doctor next time you see/hear from them and talk about here as you are not alone in this matter.

Take care and keep well.

X

[Meg52]

I have Lupus and Sjogrens and get the symptoms you mention. I use glandosane for dry mouth and hylo tears for dry eyes. My dentist says lupus can cause my tongue problem.

Sorry I don’t know anything about hydroxy as I’ve never taken it. I take mycophenolate mofetil for Lupus.

Definitely mention it when you see the rheumatologist. Good luck with the trial, I hope you start feeling better soon.

[Chris21]

Hi staceylouise,

I have SLE and sjogrens and yes I do get the same that you’re describing. No one has been able to say what causes it. I end up sitting with my tongue out 😁 I’m not sure if it’s anything to do with types of food. Crisps are a killer. When my throat feels sore( know that it’s not a virus or bacteria ) I use diflam spray. There are all sorts of sprays and gels for dry mouth, it’s a bit trial and error to see what you like. I couldn’t get on with gel so use a spray, there’s also xymelts (think thats how you spell it) it sticks on your gum and just melts, I tend to use this at bedtime, stops throat getting dry. There’s also a tablet that the consultant can give if he thinks it’s suitable, I couldn’t get on with it. As you can see there’s no easy answer. I take hydroxchloroquine, I don’t think it helps the dryness but definitely helps my fatigue and joint pains.

Hope you get some comfort soon x

[nanleighh]

YESSSS! I have constant sores in my mouth and tongue. They start out like a big blood blister then evolve into ulcers. I also have chronic dry mouth and sore throat which radiates into my ears. I’ve read where red spots and a burning tongue can be symptoms of thrush or yeast in the mouth and throat. I don’t have that but you might ask your physician about that if you suspect it. The sores and dry mouth do go along with SLE. I wish you the best of luck in your journey, take care 🍀

[chrisj]

Diagnosed with mild SLE in 2005 and taken off hydroxy last october as things have been stable for "some time". As for my mouth...gggrrrrr....diagnosed with Sjogrens, again some years ago after a biopsy came back positive.

Ulcers were a constant, I was sipping drinks to help get my food down. My saliva glands are drying up. I despair sometimes but have had to learn to manage things. The dental clinic I go to for check ups prescribed Difflam mouthwash and its been a great help at dealing with the sores.

I was buying Bonjela which stings and I was told by the dental team to stop buying it. Also prescribed sprays but these days I buy them, Oralieve is one, there are quite a few. I use them mainly in the night.