sjogren's syndrome and sore swollen tongue???

I have sle and a handful of other auto immune disorders and have recently been diagnosed with sjogren's. My question is does anyone else suffer from a swollen sore tongue with sjogren's? My tongue is so swollen that it feels uncomfortable in my own mouth and even wakes me during the night. I'm currently taking prednisolone, which I know causes oral thrush and self treated it for this but to no avail. I do look like I'm presenting with thrush and my dentist recently confirmed this but a weeks course of flucanazole on and I'm still suffering. Is this normal with sjogren's? I'm also using a prescribed mouth spray which is helping with dry mouth but not reducing the swelling and soreness. Any advice from fellow sufferers would greatly be appreciated. I also increased my plaquenil to 400mcg daily about 3 months ago due to frequent flaring, could this be causing it?

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17 Replies

  • hi i have lupus /fibro/ and lots of other goodies my tongue swells and i get lots of ulcers , i had to go on immunsupressants which i must admit it have calmed my eyes and mouth down , i also get a mouthwash on prescription DIFFLAM thats briilant hope ive helped.. ps if u check ur side effects of ur meds some of them may say swollen tongue its worth a look

  • Hi kittykat68,

    Thanks for your reply and I'll look into that mouthwash. My consultant increased my plaquenil a few months ago which I know can cause swollen tongue so I wonder if it's that? I've just realised I put this same post on a month ago, Omg lupus fog, I'm losing the plot! X

  • I have found using a Bio-Culture clears my mouth up. I don't know how much natural medicine you have tried or looked into. But this was a total shock to me. At one time my mouth was so bad that soft bread would tear my mouth & lips up. This Bio-Culture is some nasty tasting stuff, swishing it in your mouth for as long as you can & then swallowing it... the effects kicked in pretty quickly; first cooling the heat in my mouth. Bio-Culture contains up to 10 billion friendly bacteria, Lactobacillus acidophilus and Bifidobacterium lactis known as probiotics. Probiotics are scientifically proven to help in the digestive system by replacing only the good bacteria. All the medicine that I have been on; the side effects sometimes are worse that the benefits. And at the time I would have tried anything... I was in such a bad way. Now whenever I feel a flair up coming on; my bottom lip & tongue start to burn or tingle, I use this stuff It has worked wonders for me. Anyway...that's my 2 cents! :) Best of luck.

  • Ooh good tip, thanks 2dogs. I will research bio cultures now as I've not tried anything like that but am willing to give anything a go right now as my mouth isoso uncomfortable. Many thanks. X

  • Sezzie, what dosage of plaquenil are you on now? My doc just added Sulfasalazine 1000mg/ 2xs a day. I don't like plaquenil & what it does to my skin. I quit taking it... as well as prednizone. Just curious...

  • Hi 2dogs,

    I'm taking 400mcg of plaquenil a day and 5ml of pred, come down gradually from 30 .What's sulfasalazine? That's a new 1 to me. That's a shame plaquenil doesn't work for you as it's helped me tremendously. X

  • Sulfasalazine (Azulfidine), used to treat pain and swelling in arthritis, belongs to a class of drugs called sulfa drugs. It is a combination of salicylate (the main ingredient in aspirin) and a sulfa antibiotic. Sulfasalazine is also known as a disease modifying antirheumatic drug (DMARD) because it not only decreases the pain and swelling of arthritis, but also may prevent damage to joints. In addition, it may reduce the risk of long term loss of function.

    I love the way they use the *may, it may have side effects, it may cause this or it may cause that. Ironic, we pay the medical profession large amounts of money to practice on us. I know I am headed for a rant here... but just once I'd like to hear; " I promise it will help you"

  • Hi 2dogs,

    Thank you for that , not only has it been helpful for me but my sister in law's struggling with arthritis and allergic to tramadol so I shall inform her of this drug too. I don't think us lupies will ever hear the words "I promise you it will help" we're just too complicated, but we can hope! Many thanks for taking the time to reply and wishing you well. X

  • Hi i have all the same symptons as you my tongue gets very swollen from time to time its a very awkard feeling, some nights when i am going to bed i take a table spoon with me to press my tongue down. A nurse in the hospital told me to do that as i was so fearful of choking in my sleep, but it settles down and maybe doesnt come back for another week or so ,ihave had this problem for 3 years now.

  • Hi libainfo 1,

    I know the feeling it's awful. Mines been swollen for about 3 months now and is so sore. I'll have to try the teaspoon tip. Thanks. X

  • Hi

    I don't have sjorgons as far as I know. But I do get a sore tongue. In fact I have had a crack down the centre of my tongue for a few years. It also feels swollen and sore with ulcers.

    I notice you where concerned re oral candida. Some times it is necessary to use treatment for a number of weeks to get rid of the spores that are dormant. Recently I used 2x2 week treatment and got a better result. Although either the prednisolone injection or methotrexate is helping also. I also use sugar free sweets and gum constantly to increase the saliva and it all seems to be working

  • Hi whathappned,

    I too have several looking cracks in my tongue, almost like it's been cut with a razor. I have battled with oral thrush since starting prednisolone a year and a half ago and although I've just finished treatment for thrush I don't think it's gone and as you suggested I may need a longer course of treatment. However the swollen tongue only really started when the sjogren's was diagnosed a few months ago so I wonder if the two go hand in hand? Sjogren's is secondary to lupus with most sufferer'soso chances are you have it too! Oh aren't we lucky ;)

  • Oh we are sooooooo lucky, aren't we all lolx. I think I could be getting it although my eyes aren't too bad but the tongue gets so sore if I stop the sweets etc. I have also stopped using contact lenses as then I did notice dry eyes. My optician has said forget monthly's but I might get away with occasional daily ones for nights out etc. It's a brill life if you don't weaken xxxx

  • Ooh dry eye's and contacts, not a good mix. X

  • My tongue and the flesh above and below my mouth swell, which wreaks havoc with my flute playing. I was on Plaquenil (allergic to it) and methotrexate (did nothing), presently on nothing. I have lupus, and my rheumatologist says it has nothing to do with it. I thought it might be a good idea to check with other Lupus sufferers to see if any of you had issues with mouth swelling. The joint pain pain: hands, wrists, shoulders, knees, ankles, feet, lower backe, etc., is enough to deal with. The mouth and tongue swelling is over the top. Sometimes, I talk like I'm drunk, because my tongue and lips don't behave. Does anyone else have this problem?

  • Hi Triscichick,

    I get the same as you and often slurr like I've had a drink. My gp has referred me to see an oral surgeon, I'm going on the 3rd of July so I'll let you know how I get on. X

  • I have Sjogren's. My husband is a dentist. He gets me SALESE lozenges for dry mouth. They are sort of like gummies, but are peppermint flavored, and you just spit out the part that is left in the mornings. I only use a half of a lozenge at night between my cheek and gums. It helps to keep my mouth from drying out and another plus, using this product has helped to heal my vocal cords which had been damaged by my acid reflux and the dryness. I am a speech pathologist, so this helps me at work and also I am now able to sing again, not like before, but at least I can sing along in church, which is wonderful!

    My husband also has a tiny vial (about the size of the eraser and top metal part of a pencil & costs about $80) of some type of substance that cauterizes mouth ulcers. It will bring you to your knees when it is first applied, but after about 3 seconds, the pain is totally gone and healing can begin. Ulcers are tiny, but can make you feel so miserable, but this stuff is like magic, the pain really is instantly gone!

    I also went on a low carb and no sugar (I use Stevia) diet, and only once a week just eat what I want. It makes all the difference in the world when I am eating healthy, really just meat, eggs, nuts, & veggies.

    Hope this helps.

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