Mouth ulcers: Hi Since I first came down with RA , I... - NRAS

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Mouth ulcers

grainnek profile image
12 Replies

Hi

Since I first came down with RA , I have mouth ulcers all the time. These are very painful when they come up on the lips or tongue. I am not on MTX yet and I know that can cause them but does anyone just get them as part of their RA and not because of a side effect of medication. The only time they go is when I am on steroids and as soon as I am off steroids theu come back

Thanks

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grainnek profile image
grainnek
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12 Replies
xandii profile image
xandii

Hi,

I dont know how long you have been diagnosed with RA but have you been tested for any other problems that you might have as well ?

I dont mean to frighten you but if you have anything ekse that needs taking into control then it is best getting it sorted out dont you agree ?

Anyway, my point is that there are some conditions where mouth ulcers are very prevalent, one of them being a very rare condition called BEHCETS.

There is a site on here for Behcets and it might just be worth having a read to compare some of your other symptoms just in case ? As with a lot of these subjects, the symptoms are common to many.

I have Behcets as one of my conditions which also include Psoriatic Arthritis, Psoriasis, Gastritis and Ulcers, Liver Cirrhosis, Carpal Tunnel Syndrome, Diabetes and a whole other load of skin conditions and all manner of other constantly evolving problems that come and go! Lol

The fact that mouth ulcers are a problem for you just rang a little warning bell as most people have never heard of Behcets anyway.

Good luck and even if you just write this one off after a quick read then it will be worth a small investigation just in case.

Best wishes,

xXx

grainnek profile image
grainnek in reply to xandii

Thanks

i have checked out Bechets on the internet and dont seem to have any of the other symtoms just swollen and sore joints and of course the devil exhaustion

Janeellen profile image
Janeellen

You really need to talk to your Dr or rheumy nurse ASAP. Cronic mouth ulcers can be caused by vasculitis and lupus, both of which have connections to RA ...good luck ..x

grainnek profile image
grainnek in reply to Janeellen

Thanks for replying

Both my GP and Rheumy are aware of my mouth ulcers and both say that they are a part of my RA. Its just that when reading posts on this site it seems only members on MTX seem to have this problem.

I am probably going on MTX in the next couple of weeks so am concerned they will be worse

ann_martin37 profile image
ann_martin37 in reply to grainnek

I get mouth ulcers too. I use medicated mouthwash - corsodyl which helps and also the mouth ulcer pastille so which seem to reduce the worst ones.

grainnek profile image
grainnek

Thanks

i never thought of using zovirox and the ones on the lips are the most painful. I will get some today and add to my growing toolkit to cope with this horrible horrible disease

RA22345 profile image
RA22345

wishing you well. I find good old Bonjela works too. I get ulcers quite regularly and am not on mtx.

barbieg profile image
barbieg

I suddenly got mouth ulcers 2 yrs ago , on my lips , tongue and inner cheeks. Very painful. I was initially told it was part of RA. I used Corsodyl and salt water which help. Mine turned out to be Oral Lichen Planus which was diagnosed after a biopsy. It is another auto immune disease too. I use SLS free toothpaste which really helped me. I buy mine on line after trying a number of different ones. Don't think I can mention on here which one, but you can get different ones in Holland and Barret. Worth a try.

Kariss profile image
Kariss

I suffered from mouth ulcers long before being diagnosed with RA and going on to mtx. I get them on my tongue lips and gums like you. They are a sign that your body is run down or suffering but they can also be a sign if you are a bit anaemic. Having tried all the over the counter pastes and gels, I find regular rinsing with salt water best of all.

If you get put onto mtx, do mention the ulcers because mine became much worse. With mtx you have to take folic acid too and I started on three days a week but moved up to six (just missing the day I take the mtx) as this helps the ulcers. Then I moved onto the subcutaneous injections and this has helped keep the ulcers down best of all.

I was also told that a zinc rich diet helps with ulcers, so that's worth a try...lots of green leafy veg etc.

As the ulcers are part of the auto immune system being out of kilter, hopefully you will respond with the treatment and the ulcers will clear up. They are definitely horrible things and I sympathise with you - so much pain from something so small, and they never come alone but always in twos or threes, or so it seems, so the whole mouth is sore at once. :(

Best wishes, K

Joy_1 profile image
Joy_1

Hi there, one of the first symptoms I got ie before joint pain, stiffness etc etc was mouth ulcers. I recall having them for a couple of weeks. Then they just suddenly disappeared. And the RA began .....

Those mouth ulcers were nothing compared to the ones I got with MTX. WOW, mouth ulcers caused by MTX were in a league of there own!

But thanks to this site and my Pharmacist NOT my Consultant I solved it with saline. Had my MTX yesterday and I feel a whopper coming - salt rinse is already having an impact. Yippee!!

Padram profile image
Padram

Hi, mouth ulcers could be caused by secondary Sjogrens, which afflicts many RA sufferers.

npkb profile image
npkb

Just a thought.

I had recurrent problems with ulcers on the side of my tongue. On yet another visit to my gp for something unrelated I complained as always about being exhausted. He decided to check my B12 levels. Turns out I have pernicious anaemia (another autoimmune delight that can accompany ra). Now have B12 injection every 12 weeks. No more ulcers or sore tongue (unless I let my injection go overdue when they reappear).

I'm still exhausted - unfortunately the B12 didn't cure that - though perhaps less than before!

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