mouth ulcers: I've never had any real side effects from... - NRAS

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mouth ulcers

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I've never had any real side effects from mtx but a week ago I got a couple of tiny but painful ulcers on the tip of my tongue & they are not going anywhere. My nose has also started to feel odd - both nostrils sting a little & feel as if too much cold air is whizzing through them. I'm wondering whether it's because I've got some tiny ulcers in my nose, too.

Am really fed up - I'd had such a clear run with mtx so far. Have just started on Sulfasalzine too (ulcers started before that) and feel generally flat & fed up. I'm trying to be positive about the drugs but either they are starting to sap my energy or it's just that the ulcers etc. are reminding me that I take these drugs - I'm not wonderful at coping with that reality 24/7.

Any thoughts on how long the ulcers might last? (I'm seeing Rheumy nurse next Wednesday.)

Hope you all remain undefeated by the weather & are feeling less gloomy than I am. Luce x

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helixhelix profile image
helixhelix

I had a run of over 2 years on MTX/ Hydroxy &' Sulpha trouble free, and then got mouth ulcers. Some swear by salt gargles, but I opted for Eludril which helped. Folic acid was increased to try to knock them back, and also helped a bit. But eventually drove me nuts, as well as starting to loose weight rather too quickly, so consultant swapped me over to injectable MTX. Within 10 days they were gone! That was several months ago and, fingers crossed, they have not been back. Polly

in reply to helixhelix

HU may have worked its magic - I find there's something about putting things in writing - I've woken up much less sore in tongue & nostril dept. & just feel more human.

I had been experimenting with taking Folic Acid 5 rather than 6 days a week, just to give the mtx more of a chance, have gone back to 6 just in case. I have been gargling with salt following tooth extraction so that may or may not have helped - a week felt like a long time with those pesky blighters on tongue but perhaps it's not.

Eludril noted just in case & I'm wondering whether injecting mtx might be a good idea all round - most people seem to consider it an improvement.

But am also getting interested in minocycline & will ask Rheumy nurse about it - you will probably hear the cries of derision echoing around your mountains.

Thanks! Luce x

earthwitch profile image
earthwitch

If you are starting to get ulcers like that then it would be worth telling either rheumatologist or nurse and asking about increasing folic acid just very slightly. Folic definitely stops that kind of side effect. I wouldn't count on them clearing up properly or for good on their own.

helixhelix profile image
helixhelix in reply to earthwitch

I didn't think you were on MTX? Thought you were still battling to get a confirmed diagnosis? But anyway, folic acid doesn't definitely stop them. Well not in my experience anyway! It did for a a few months, but they kept coming back.

in reply to earthwitch

Thanks earthwitch. My husband says my mood has been noticeably gloomy in the run up to starting Sulfa. Though part of that might be the battle with the Kafkaesque dispensary to get the flaming stuff - unbelievable! But I just struggle with the notion of the drugs - it runs deep, not logical, but I can keep reason in the picture. But maybe feeling so fed up has a physical effect.

I've read that some people take several 5mg tabs of Folic Acid a day to combat ulcers - I reckon that's desperate measures though.

Luce x

as above advice but add in tea tree mouth wash free holland barrett and or difflam mouthwash pharmacy only product BOUT six pounds difflam and four pounds tea tree

in reply to

Thanks Summer - it's helpful to know where to get these products too!

Luce x

Polly is right about injecting MTX and studies show it's significantly more effective too. I had nose sores/ bisters/ ulcers up until a few weeks ago - and I'm enjoying being spot and nose sore free just now. Everything you feel and are experiencing corresponds with my experience as you know. But the way I see it - if we are going to take these drugs it's far better to take them properly and at least the sub-cut MTX worked for my RA extremely well. If I have to take MTX it will always be by injection from now onwards. Tilda x

in reply to

I am beginning to feel that the mtx has built up in my system after a long period of grace so yes, it might be time to try a sneakier method of taking it.

I think the funny nose thing was either nothing to do with drugs & RA or, alternatively, something to do with starting the Sulfa - anyhow, it's gone now. But along with mouth ulcers I am much sleepier than usual and slightly nauseous in the mornings - not pregnant!

I did take dog out in snow drifts this morning which was wonderful - sun was shining and I could stumble & throw myself around with impunity letting all the snow break my fall. Felt better afterwards so I bet there's something psychological going on with me.

Hope party was fabulous, sure it was .... perhaps we've got the post-party blog now - I'll check.

Luce x

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