Contant severe mouth ulcers, what do you use to help?

Lupus is responding to MMF so now reduced sted's which I am due to finish 29th Aug (currently taking 2.5mg every other day) - for the past 2 months severe craters, that's what the look like! - 5 and 6 at a time of mouth ulcers (nothing works). I am positive that the reducing of the sted's is causing this as now it seems that my SS is coming out to play. I am at my wits end, my gums are sore, i can't eat or talk properly!

Over the counter remedies, bonjela, igloo and the rest doesn't work :( someone in work suggested fresh pineapple as they give this to people who are having chemo for mouth ulcers?

Anyother suggestions?

PS has anyone else notices that ceasing sted's causes more ulcers?

16 Replies

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  • i think you need to go see your gp i had similar few years ago g

  • Hi. I am prone to mouth ulcers which are very painful and last for weeks and even months. My dentist referred me to our local dental hospital and a very nice consultant prescribed Prednisolone - one table to be dissolved in a little water and used as a mouth wash as and when necessary. As soon as I start with an ulcer or my gums are red raw I use this medication and it works wonders, This means that I am not ingesting steroids as I obviously spit it out after swilling it around my mouth. Hope it helps. Gabs.

  • hi gabs: i was just posting my reply to this ? while you had posted yours. please would you tell us what mgs of pred your consultant prescribed? i would love to try this method, and will ask my rheumy for the Rx when i see her in sept/oct. your method is new to me and sounds great!

  • I am definately going to mention this at my appointment on the 22nd August - and I hope that the Dentist is willing to give this to me. I am at my wits end with the mouth ulcers every other week. They are very large and like craters in my mouth, so bad, I can't eat, can't rest my face on the pillow (right side), can hardly talk and they also set my gums and teeth off. I am aware that SS can cause problems with the teeth and gums and that it is my greatest fear - losing my teeth. Thankfully 4 weeks ago my private dentist advised that both my gums and teeth - the oral hygiene was very high with no cavities. I do hope that this will continue.

    Thanks for the advice Gabs!

  • Good luck Lulabelle - I hope you find some relief with this method. With all the problems we get with SLE if we can control one symptom it certainly helps. Hope you are having a good day. Gabs.

  • feeling for you: really nasty: boy do i know it!

    i finally tried my first oral prednisolone taper last may-june: this took 4 weeks starting at 10mg, and has left me feeling better than i have since the 1980s...but also slightly more prone to constant mouth ulcers

    a bit of background: i've been on plaquenil 400mg daily for 2 years, but my sle apparently has been lifelong without specific treatment. i also have sjogrens/sicca symptoms amongst other things. and all my life i've coped with dreadful mouth ulcers and a condition called angina bullosa haemorrhagica which creates oral blood lesions that turn into ulcers. so maybe we sort of have something in common....and i'm also replying cause when i was in my last week of that pred taper last may-june, i too started to get a sort of flare of mouth ulcers. that m.u. flare has calmed down a bit, but since monday last i saw my dental hygenist which has set things off again: terrible mouth ulcers!

    well, over the decades, i have tried EVERYTHING for mouth ulcers:

    Rx from my gp and oral surgeon (steroid inhalers are what they are on to now for mouth ulceration would you believe: not great cause exposed the whole mouth and can encourage oral thrush)

    over the counter products of all kinds (no point in listing these....there are so many)

    alternative stuff from the whole foods shop etc etc and supplement suppliers

    washing mouth with salt, bicarb, etc etc etc. none of them have helped me at all

    anyway, what has helped a bit with my mouth ulcers was my dentist getting me to dip a Qtip in corsodyl mouthwash and bathe the sore areas for like a minute (rather than expose the whole mouth to corsodyl) several times a day

    BUT always my reliable and preferred mouth ulcer Rx of many many years has been the steroid ointment adcortyl in orabase, which to my horror has ben discontinued in the uk mainly because the market here is apparently not big enough to make it worth the drug companies supplying it to the uk. BUT i've got my gp to write a prescription for the steroid ingredient (triamcinolone acetonide) in a saliva resistant base like orabase - this is also marketed in north america as kenalog in orabase. my plan is to select a canadian online compounding pharmacy and ring them to discuss the purchase of this Rx using my gp's prescription. ok, i'll have to pay quite a lot for this, but i know it's worth every penny! i know others who do this from the uk and my gp has already written the prescription.

    anyway, am wishing you the best of luck with your ulcers

    take care

  • Thanks so very much for your informative post. i have an appointment at the Dental Hospital on the 22nd Aug - and I have made a note of what you have said. I have discussed this with the other half and we have decided that I am not going to stop the 2.5mg sted's on the 29th Aug, but to stay on this a little longer. My rhemu did say I could do this if i wasn't quite ready to come off this. i need to get my mouth sorted. I am loving the idea of the sted mouthwash though and I imagine that this would be very affective as it is getting right to the route of the cause. Then fingers crossed I maybe able to come of the oral sted? I worry about losing my teeth constantly due to the SS - and try to keep my oral hygiene to a very high standard, but the mouth ulcers do upset my gums and make some of my teeth sensitive. I went to see my private dentist 4 weeks ago ( he referred me to the dental hospital for the above appointment), and he said that my teeth were healthy and gums were healthy! That's good new's for now - but it doesn@t help with the ulcers. This SS is such a pain. Having said that the 'baddy' Lupus - at least seems to be responding to the MMF which is the good thing.

    Let's hope we will both be mouth ulcer free :)))

  • You're vvvv welcome! And good luck at your appointment!

    Ps I agree with fab wheelie, below: biotene products are v helpful generally. I get them via amazon

  • My mouth ulcers cleared up once I addressed having a dry mouth - to stop your mouth getting dry "Biotene" do a range of toothpaste, and gel that you can get from your GP on prescription (I think Boots chemist also sell it but it is expensive)

  • I have used biotene products for years - cannot use normal toothpastes as they are to abrasive and inflam my gums more. I think the ulcers are a mixture of reducing the sted',s my SS and I have been checking some of my medication side affects and most of them including ramipril cause mouth ulcers :((( so can't win!

  • I clean my teeth with sodium bicarb once or twice a week to keep the mouth ulcers at bay, this works for me, and it gives me a nice pink tongue.

  • Doesn@t this dry your mouth out more? will make a note of this though as the mouth ulcers are like small craters in my mouth. So much so my face is swollen on one side, can't eat as is painful and I am so fed up of getting them every other week - it's like losing a none win battle :(

  • I dont find it unduly drying, but I do drink a lot of water after using the stuff and try not to swallow it. You may have a yeast infection, so be certain to have a live yoghurt or pro-biotic a couple of times a week. And lay off the sweets and sugary stuff.

    It certainly does feel like a no win situation, but hang in there. You will get your life back.

  • Hi I used to suffer the way you are and know just how uncomfortable it is so can sympathise. People look at you as if you are drunk when you are speaking funnily too so I will recommend what I used as it cleared everything up within a week. It is available both with or without a prescription. Hydrocortisone 2.5 muco-adhesive buccal tablets they are little miracle workers. It was so nice to eat and speak properly after using these I was so grateful to my doc prescribing them. Also since I have been taking methotrexate and folic acid I have not had any mouth ulcers which is quite a result so have managed to get back to a weight I am happy with - I was very poorly last year and lost three stone, I looked like a bag of bones!

    I hope that you manage to get rid of the ulcers, good luck

    Madmagz x

  • I get terrible ulcers/sores in my mouth & have one in my nose a t m. They get so bad in my mouth that I really want to scream & it does make me cry. I've got a very bad 1 at the one side of my tongue that has been there for 13 yrs & it's gotten bigger & I cannot describe it apart from it's excrutiatingly painful, it gets infected, & i've to use corsadyl to clean it off with a Q tip. It's always open & never heals up. Thethe other side of my tongue I had an extremely big one that just wouldn't go no matter what I used, so in the end had to see a Maxiall Facial specialist who decided to cut it out to see if it was cancerous, luckily it wasn't. But ever since then it has not healed properly, the place where he cut it out on the side had 2 small ends that he sewed back together, but it didn't do that & now they are just holding with a small tissue of my tongue & i've got a criss cross section there that's all open. It's so painful & to top it all I get horrendous ones on the inside of my lips esp at the bottom lip, they come up so bad that sometimes I look like i've been punched in the mouth. 4 wks ago I had 2 big yellow ulcers come up (forgot to say i've tried everything you can buy over the counter & on prescript but nothing works) so these yellow ulcers grew & grew they were about 1" long & they were thick too. The pain was awful making me cry, so saw the Dr who gave me strong antibiotics & they worked a little bit by reducing the size of them. But i've still got them & have dark red lumps along my lipline too! I don't know what to do or take as it's getting me down so very much. I've got SLE Lupus & Sjogrens, RA, APS, Osteoporosis, Osteoarthritis, Angina, Hyperparathyroidism, Temporal Arteritis, Vasculitis, degenerative disc disease, had 2 major strokes, 5 t.i.a's & stage 3 Breast Cancer & had to have a radical mastectomy of my left breast! Got lots of other probs & am on a massive amount of meds, so when I read this about ulcers I thought I would get in touch about what's best to use? Can anyone recommend something for me too pls? Many thanks & sorry for hyjacking your post Lullabelle. I hope your ulcers clear up soon.

  • I get the ulcers but my tongue also peels. Does anyone here has this problem? Sometime it hurts but not all the time.

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