I was diagnosed with Lupus in March 2012.... Mouth ulcers seem to be a problem.

[mishagirl]

I also gave up smoking 3 months ago and I now seem to be getting more mouth ulcers and salivating alot more, my gums also seem to be bleeding more too! is this to do with the lupus or not smoking? I really need more information on Lupus, not even the rheumatologist seems to be able to answer my questions, i.e, what is a flare up? I have no set time of when in pain, my pains seem to be all on my left side, is this normal? is there a support group in my close area i could attend or maybe start one? forgive the 1001 questions but I would just like to know more

[letslaugh63]

Hi mishagirl I too have given up smoking 2 months ago.haven't got mouth ulcers but lose skin of inside mputh have little red blisters inside bottom lip and bigger ones under tongue didn't bother me at first now feels like I've been punched in mouth and nose don't feel right.also purplish marks on left side of lips.I haven't been diagnosed with anything yet but my left side is worse with certain thtings,face arm and right side hand,breast,foot.got 1st app for rhuemy April.what area u in x

[mishagirl in reply to letslaugh63]

Thanks for replying letslaugh63, I live in Derby and I know there are groups in Loughborough and Notts but it would be nice to have one that is really local. There are so many symptoms for Lupus but you never seem to know what is a symptom or not! Ive also had a session a few weeks ago with constant hot sweats during the day, I can just be sitting at my work station or home and woosh! seems to start in my toes and work up. When they suddenly stopped I was in that much pain in my neck and shoulders I referred my self for physiotherapy and it seemed to have helped as I can now at least turn my head! I also get alot of aching in my node in my armpit and this seems to happen when I'm feeling worse so I think this all ties in with a 'flare up'. I think it would be nice to be able to discuss things like this in a group just to see if there may be a common link? When you see your rheumatologist make sure you go with a list or diary so you can explain things to him, Lupus is mainly diagnosed via symptoms apparently plus a positive ANA (anti-nuclear antibody) blood test. x

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The cause of the ulcers is unlikely to be NOT smoking (in my non-medical opinion). Having said that, I have no idea what the cause might actually be - apart from the unsatisfactory answer "lupus" of course.

[mishagirl]

Thankyou for your reply MaggieS. Everything seems to get blamed on the Lupus, I think sometimes family, friends and colleagues get fed up of hearing that as I think they don't believe you have an illness!

[letslaugh63 in reply to mishagirl]

I don't know about that but I have been keeping notes and reading them back,trying to be on outside not sure I'd believe myself either.symptoms jump around and change so much.I have these things happening to my body that I can't explain or get to grips with so how can I expect anyone else to understand or accept them

[KathinAyrshire]

Hi mishagirl,

Mouth ulcers should not be ignored, within a few seconds and no discernible cause, I can develop an ulcer, full of fluid, over half of my right palate. Each time this happens my palate has thickened so that now it is twice the size of the left half, am waiting for maxillo facial appointment though my section of the NHS will take at least six months for the appointment, in the meantime a reduced to 'spoon' meals, when the pain subsides I am due a rare steak that will need chewing! I still smoke, am at the age when to me one way of being ill is no different that another. PS still enjoy a glass of wine too, to dull the pain.

Chin up, all is not lost I will you well xx

[jemmyjemjem in reply to KathinAyrshire]

Hi Kathin

I really think you need to go back to your gp and ask for an urgent referal to MFU as this is not quite right and needs urgent investigation, a normal mouth ulcer with be a circle, with a white centre, and a red raised edge, they can sometimes be jagged and will sometimes join up to form a larger one. It should rarely be fluid filled, and should cause no thickening. Good luck .. Jem x

[caninecrazy]

i too have reoccurring mouth ulcers and bleeding gums. my lupus spech said "its lupus" so i just live with it everyday. i clean my teeth 3 times aday and gargle non-alhoholic mouthwash twice aday to help save my gums and teeth? my mouth is alaways dry when i wake but havnt said that to my spech as seems trivial to mention.

[jemmyjemjem in reply to caninecrazy]

Hi Canine

Cleaning ur teeth more than normal can make the worse, try using a flouride free toothpaste as you may find this settles them, mouthwash as well even non alcholic can aggravate them, try asking ur gp for a betnasol steroids mouthwash, you don' tdrink it, just swill it round your mouth, so you don't need to worry that your taking steroids, all Oxytetracycline crushed into a mouthwash will help any infection. If you want any other top tips, pls feel free to PM me x

[LesJames]

I have never smoked and get ulcers, blisters and huge blood blisters frequently.

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Ulcers mouth and nose are a sign of active lupus there is an antibacterial cream on prescription that helps heal the nose ulcers also bonjela or daktarin oral gel ftom the chemists for your mouth.

I don't get them so much after 10 yrs but at the beginning it was debilitating. Warm salt water for rinsing mouth out helps..

[jemmyjemjem]

Hi

I am the mouth ulcer queen and use to have 30 at any given time, this is what led to me eventual diagnosis, I use to have them up my nose as well. I did not eat for 2 months as they were so bad, and ended up on a drip feed as I couldn't drink either, some of the photos of them would make ur eyes water !

If they are particulary bad, there are a few things your doc can give you, Betnasol mouth wash it a steroid mouthwash wash and is really effective, also Gelclair, this is given to patients receiving chemo, and its a mouth wash, but you swill it around your mouth and it forms a protective layer, my MFU consultant gave it to me, but I have it on repeat (however since starting on my lupus treatment all my ulcers have gone). Do not use anything with a lindocaine pain relief, such as anbesol, as the chemicals will just make the worse and bigger, I eventually became allergic to it all. You could try difflam spray, this works well and I use it for tonsillitis.

Cleaning your teeth constantly is the worst thing you can do for mouth ulcers, as the toothpaste is so full of crap, they love flouride and will flourish if you use it regulary. try a flouride free toothpaste, you can buy one in holland and barrat.

I also find drinking a glass of orange juice a day helped as this is a natural healer and I use to swill it about my mouth and then drink it, I swear it worked, but I am off the juice now I am on steroids as I was getting fat,.

If you wake up with a dry mouth, this can make them worse, and is normally a sign your breathing through your mouth at night, you dry your mouth out and then the lip cheek or tongue catches on the teeth rips and causes the ulcer. It is worth asking for a sideways referral to ENT as you may need to see them, I had a blockage in both nostrils which caused mine, so I was breathing through my mouth, drying the mouth out, which meant i produced more saliva, got a tartar build up and oodles of salivary gland infections.

Mouth ulcers are a by product of lupus, as its just another way of ur body attacking itself, I sympathise with anyone who has ulcers or has had them, they are horrific, my husband has had 1 in his whole life and finally understood the pain i suffered for over a year, I saw everyone, MFU consultants, specialist dental consultants and when I finally saw my Rhumie I was very close to the edge as I had been in pain for so long.

Maybe I should write a blog post on how to deal with them, as I really have tried everything ! I use to cry every night as the pain was horrific, I could barely talk, eat or drink.

Good luck

Jem x

[Paul_Howard Partner LUPUS UK]

Hi mishagirl,

You might like to read our article on Mouth Ulcers which we published last year. You can take a look here - lupusuk.healthunlocked.com/...

If you would like more information about lupus, please send me a private message or email [e-mail] with your name and address and I'll send you one of our free packs.

[Nightjar in reply to Paul_Howard]

Lots of good information to pass on - thanks Paul!

[Nightjar]

Hi Mishagirl, Well done for giving up smoking! I too suffer mouth and nose ulcers, as well as vaginal ulcers (..most uncomfortable!). Ulcers come and go depending on how well I manage to keep the lupus at bay. I am over-sensitive to most toothpastes and have found that some seasalt in (a little ..not much) warm water works for me. In my case, Aloe Vera Gel also help on ulcers 'anywhere' - though not tried it on toothbrush.

I hope you find something that helps you. xxx

[norma52]

Hi Mishagirl

Mouth ulcers are one of the symptoms of lupus. I used to get them before I stopped smoking and I got them after I stopped so I don't think smoking has any relevance as far as the mouth ulcers are concerned. I also got mouth ulcers when I was receiving chemotherapy when I had Non Hodgkins Lymphoma - apparently they are a side effect of chemo as well. Anyway, my chemo nurse gave me a mouthwash called Corsodyl to try. At that time you could only get it on prescription but now you can buy it over the counter - even in Tescos. That has been the most effective thing I have tried and believe me I tried every cream and potion I could lay my hands on - I even got steroid tablets from the doctor which I had to place on the ulcers to let them dissolve. Nothing worked as well as Corsodyl. When I had my medication changed to azathioprine I found that I was getting fewer ulcers than before although they do still come when I am experiencing a particularly strong flare. I tend to have 3 or 4 at a time and it is really upsetting because they drag you down so much. I've often said I can cope with the joint pain and the muscle pain but I can't cope with the ulcers! Hope you get something that will help!

[mishagirl]

First of all I wish to say thankyou to everyone who replied to my question, I'm sure like yourselves I have many more and I have read through past questions and have got lots of tips from everyone. It has made me realise keeping a list or diary of symptoms is important and also made me realise just how much I'm suffering sometimes! It has also made me aware that at the moment I am having a flare up. I have to admit I have just come off my anti-depressents too and I feel ok for the first time in the 10 years I've been on them ( I started on them through divorce and death of my daughter) so that could be down to the fact I am finally coming to terms with these things and my rheumatologist did say that possibly the Lupus could have quite possibly started when my daughter was ill and if I think about it I have just worked myself stupid since she went and ignored all the pain I was in!

One of the things that has fascinated me most about this website is how employers treat you, I work for the NHS in quite a physical job and I am recently on a 'watch' list as some odd days I just can't seem to get myself together and get a nasty migraine which floors me. So much for support, you are made to feel like its made up!

Once again, thankyou to everyone and I have become a member of the Lupus.org site and hope to find a support group in Derby at some point.