sjogren's syndrome and sore/swollen tongue

Hi all,

I saw my consultant last week and he diagnosed me with sjogren's in addition to my sle. My tongue is very swollen and sore, has been for some time now and I was just wondering if anyone else gets this? Also what is best for dry mouth? My rheumy told me to drink plenty and chew gum but this isn't giving me enough relief. Any advice would be greatly appreciated.

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28 Replies

  • hi sezzie

    I cant offer any advice on the dry mouth but mine is too and my tongue is very swollen and probably has been affecting my speech for some time tho I didn't realize my tongue was the far my own gp hasn't/wont recognize these symptoms .do you have the discolouration around your eyes and puffiness above them?my gp when i saw him about these told me "to wear make up"!!

  • Your gp's response was "to wear makeup" omg that's disgusting! Yes I do have discoloration around my eyes and puffiness, are they related? X

  • from what I have read upon sjogrens(only recently heard of it)they are.i hope to get a referral to a different rheumatologist when I next see my gp bearing in mind I have written to him requesting referrals to dermatologist ,a different rheumy btu he hasnt responded .I am awaiting a call from another gp at teh surgery re tongue swabs taken recently as have had 2 reactions of oral thrush due to antibiotics but the last time my tongue never went down-so sjogrens?

  • I too suffer with oral thrush. I must have had it a dozen times last year, although I was on high dose steroids which doesn't help. Sounds like you've got a crappie dr and consultant.

  • Or it could be down to medication rather than sjorgens?

  • Hi there

    I too have Sjogren's. I have a vitamin B12 deficiency. This can cause a sore, swollen tongue. I'm sure your GP/rheumatologist will have checked your B12 levels but it does no harm to ask?

  • Hi lupylass,

    I have a b12 deficiency too and have 3 monthly injections. I didn't know it caused a sore swollen tongue although I've had pernicious anaemia for about 7yrs and this has been a more recent thing over the last few months so I put it down to sjogren's. How do you manage the dry sore mouth?

  • Hi there

    Mine is ok now. I get a dry mouth from Sjogren's but just drink water. Do you take hydroxychloriquine or anything? I think it probably helps a little with mine. Also avoiding caffeine, alcohol etc can help. I don't eat bread as it is too dry (it would be gluten free for me as I have coeliac disease) and I eat lots of fruit to moisten my mouth.

    It is trial and error to see what helps.

  • Yes I am on hydroxy and quite a few meds that cause dry mouth so it might be worth reassessing my meds. Thanks for the tips.

  • Hi, I sometimes wake at night with a dry mouth and I bought a spray (from Boots I think) that was not too expensive-and it does help me get back to sleep.....I also stopped taking Amitriptline (one of its side effects is dry mouth) which had been prescribed for Fibro, and have to admit that it has been better since, also did not really miss taking it- I do still sometimes wake up with it though and it seems to get worse when I am flaring :-)

  • Hi bam1993,

    Thanks For your reply and I will give that spray a go. I too am worse when I'm flaring. I'm currently taking duloxetine and loratadine which both cause dry mouth so I may have to look at changing them. Oh the joys we face ;)

  • Hi there, I suffer with a dry mouth as a side effect of medication. I was initially given glandosane! which is a spray that supposedly increases the production of saliva. However when I mentioned this to my dentist she was very concerned and her view was that chewing sugar free gum would be a better idea. I must say, it took some getting used to as I was actively discouraged from "chewing in public" by my parents. That having been said, I gave it a go and honestly for me it really does work, because one is producing saliva naturally as a result of the chewing process.

    I hope this may be helpful in some way :-)

    Foggy x

  • Hi foggy,

    I giggled reading your reply as I too was raised not to chew in the street, and although my grandma who raised me passed away 16 years ago I've still never done it :) I too have concerns about my teeth so it may be worth having a word with my dentist to see what he recommends, failing that chewing in the street!

    Thanks for your advice. Sarah X

  • Hi Sarah, I'd have to agree with Foggy and her dentist about the spray, it caused me more problems than it did help. If you can put aside the deportment issue (I too was told never to chew - "girls look cheap, and like cows chewing the cud"), sugar free gum is really good, particularly peppermint because it's slightly stronger which activates the saliva glands more. I don't find spearmint does a lot. Wriggleys Extra peppermint is perfect for the job. At night time I have a drink by my bed to sip through the night, and tea making stuff so I can make a hot drink the minute I wake up to help unglue my mouth. It's horrid, I do feel for you, I hope the gum helps a little if you give it a try xxxx

  • Hi shiny1,

    I think I'll just stick to the gum for now then. Chewing it is! ;) X

  • Isn't it odd how things we were told as children make such a difference to what we consider "appropriate" now ! Do discuss it with your dentist, because it really has made such a difference to me, and I wish it could for you too :-)

    Shiny's advice about the peppermint is good too, I shall give that a try - thanks :-)

    Foggy x

  • Heehee, we can all chew away and be 'as common as muck'...mind you, I find chewing with my mouth closed doesn't make me look like a cow, so perhaps that's what my late Nana was on about?? Granny Smiths - also good for producing saliva :) xx

  • Who'd have thought the giggles we could have discussing "dry mouth" ;)

    Thanks shiny and I'm going to send my hubby out for some granny smiths.x

  • So true foggy and the funny thing is that i preach the same thing to my 9yr old son, whom I have to admit fights me on it and usually wins!

    Thank you so much to you all for your advice and happy (mouth closed) chewing! ;)

  • I use glandsosane which helps dry mouth but not sore swollen tongue, which I think for me is relates to something ive eaten. At my last appointment with the rhuemy consultant he was suggesting a tablet that helps the saliva. I declined as the spray works at the moment for me. Which my dentist said was good?

    My gp put the spray on prescription for me and has said if it doesn't work come back as there are lots of other products that can help. your gp can help find what is right for you. I can't chew guy as I've also hyper mobility and would give me jaw ache :) hope you get a solution as it is uncomfortable x

  • Hi chris21,

    Thank you for your reply. I've just phoned my dentist to see if their's anything that they can recommend which won't be damaging to my teeth so fingers crossed.

    So funny I didn't even notice the "guy for gum" I think us lupies must read and write with the lupus fog! ;)

    Take care, Sarah.

  • I hate predicted text.. Guy should read gum!! :)

  • I have just read through this thread......and for me the 'guy for gum' just really did it, I just cracked up-but think it must be my mind!!! Sorry....but they do say that 'laughter is the best medicine'!!

    NOW, and I really do not want to put a damper on things, BUT.... what worries me is the 'sugar free gum' (or guy!!)-I am always concerned about Aspartame, and they put it in so many 'sugar free' products - I am quite sure it does more harm than good-but maybe that is just my opinion!! Also, I have recently stopped taking Duloxotene (Yenvette) and Quinoric as have started taking LDN-Low Dose Naltrexate, as I am fed up with the side effects of conventional drugs. Good Luck Chris21 and hope you find the right way treat your dry mouth problem. :-)

  • Hi bam, I too am really not keen on using things with the dreaded aspartame in and I honestly think I can say this would be the only product that I knowingly use that does contain it.

    If you are looking for laughter bam I think you are quite right in saying it's the best medicine, I enjoy laughter and try to promote it as I know it releases endorphins which can really make a difference :-) :-)

  • hi sweets I have the same problem!! I went to my dentist and he gave me some speshel tooth past and said it wos ok to suck on suger free sweets for the bad tast !!!

  • Hi donnadragon1,

    What is the toothpaste and does it help? X

  • hi sezzie the tooth past I got from the dentist is colgate Duraphat 5000ppm Flioride its because the serliver in your mouth seems to thiken so suagery things stay on your teeth and if your not carefull you will end up with grotty teeth!!!

  • Cheers love, I'll mention that to my dentist when I go next.

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