It's always the same .....

Wonkylegs

..... just when you're about to start a new treatment, arthur flares, the weather gets grotty, and then you get an infection which puts everything in doubt again :roll: :roll:

Last week I missed my MTX as had a sore throat and mouth ulcer. Throat better but ulcer not, so no MTX today either

next week, on wednesday, I start the Infliximab infusion ..... but the rheumy nurse said that I must be on MTX or I can't have the infusion ....... so I am hoping that the mouth ulcer is listening and will go PDQ so I get the jab on Tuesday.

fingers crossed here
WOnky

jennylynn

Now ulcers i actually know something about x:))

try hot salty mouthrinses to try and keep the ulcer free of bacteria, and if its somewhere that would be aggravated by hard foods try and eat a softer diet (irritating the ulcer with hard foods can prolong how long it stays for). Especially if its on the tongue, its easy to catch it whilst having something particularly chewy.

i knew this dentistry malarky would come in useful. x:))

You possibly already knew all of this, but everyone on here is so helpful with the joint related info, its nice to actually be able to give a bit back.

Good luck getting rid of that ulcer!

Jenny x

dreamdaisy

I had infliximab without methotrexate in either form - meth is not the be all and end all of this malarkey, why shouldn't you go ahead? As long as you are better, then that is the main thing, surely. You should have enough meth remaining in your system - don't they say it takes three months to all go away? Strewth, the way these medics change their tales to suit them really gets on my wick. Fight for it, wonky, you have waited long enough to start this infusion, don't let a little thing like no meth for two weeks delay them. It ain't on. DD (who will be a meth-free zone tomorrow - hurrah! There is an upside to feeling very grotty!)

Wonkylegs

thanks Jenny - never thought to ask you :roll: think my brain was only working on reduced power I have been using the corsodyl daily mouthwash as advised by my dentist, but will switch to the stronger one for a few days and see if that helps. GReat info re: the food though - I do have a sore tongue, so maybe that will help too.

the rheumy nurse asked if I had developed oral thrush :shock: but said I didn't think so , without really knowing what it is ..... any idea?

thanks xxxxxx

thanks DD - great info from you as always and interesting to know. The different rheumy nurses often say different things too, but this was the chief one, so what she says goes as far as this is concerned ...... unless I insist that they get in touch with the consultant there is time yet!

thanks again
WONky

jennylynn

it just happens that i'm currently going over thrush in my oral medicine module! oral thrush looks a bit like someone has sprayed white spray paint on the inside of your cheek, and it wipes away easily. Its caused by some medications and unfortunately with our conditions we are more susceptible to it :-(
If you are using corsodyl and looking after your teeth though you grately reduce your chances of suffering with it. I would probably switch to the normal corsodyl as the levels of chlorhexidine are higher (so it will hopefully sort your ulcer out a bit quicker!). Go back to the daily stuff after though as regular corsodyl really stains teeth (as if we dont have enough to deal with!) x:))
I really hope that pesky ulcer goes away.

Jenny x

annie_mial

I get oral thrush and ulcers and sore gums on a pretty regular basis, caused in part by my steroid inhaler and the other part is down to methotrexate, so I am told.

It is really very bad at the moment and I am considering coming off meth for a couple of weeks. Quite apart from being fed up with a sore mouth, I need dental work done and can't face it when my mouth is as sore as this.

It's really annoying - I clear it up and we're ok for a few weeks, then bang! it's back again. I use Biotene toothpaste and the mouth wash - anything else just makes my already dry mouth feel like the Sahara. Will try a hot salt rinse, I suppose I really should have one every day whatever..........

Annie

dreamdaisy

The naproxen I take has coated my tongue in a lovely, yellow, furry mat of crud. It has done for years now, despite all sorts of meds to shift it, the continual drip, drip, drip of nap has outwitted them all - until recently that is: my last lot of tablets from the chemist is definitely a different version of what has gone before - and it's clearing! As usual it's doing nothing (oh OK, I'll be generous, very little) for the inflammation (knees, ankles, toes and wrists currently like watermelons but blood figures very low - go figure) but my tongue looks a lot better! DD

Wonkylegs

Well ..... from the descriptions I don't think I have oral thrush but I may very well have the Naproxen induced tongue fur

Actually re-read the leaflet about the naproxen as I have doubled the dose recently, and guess what ..... it can cause mouth ulcers :shock: Oh **** that is great ...... who knows with me which med is doing what ....... they say that the rash is induced by the Leflunomide that i no longer take, but 3/4 of my meds have rashes as side effects, and ulcers seem to be similarly thorough in their appearance in the leaflets :roll: :roll:

Annie - I am surprised that you are allowed to take MTX with ulcers - round here at the first sign of a mouth ulcer it is no MTX until completely healed! Never the same advice from one area to another - hardly helpful !

Right ..... am off to scare away any nasties in my mouth, and you are certainly right Jenny - the original corsodyl certainly does nothing to convince people I brush my teeth :roll: but the daily one isn't too bad for that.

thanks again everyone ..... I'll beat the ulcer yet
WOnky

skezier

Hi Wonky,

Leaving you a hope and some slurps and ((((( )))))'s . I s hope it will be sorted before next week so you can have the infusion. Cris xxx

julie47

Hi wonky

Just reading up on your thread

Sorry about mouth ulcers and that you have to miss mtx again.

I would also rinse mouth with warm salt water to try to help.
and eat rins***d pastels like sweets as they taste nice.

Hope the infusion goes ahead, will keep my fingers crossed

take care
Juliepf x

tillytop

Hi Wonky

So sorry about your sore mouth. Does seem to be a common problem doesn't it? I really hope it clears up so you can have your first infusion.

Just wanted to say that, like DD, I had Inflimab without mtx - I had Infliximab for 5 years without mtx in fact. When I last saw the consultant, he explained that the idea of taking mtx alongside the anti-tnfs is to reduce the likelyhood of your body building up antibodies to the anti-tnfs and stopping them from working. And he prescribes only a lowish dose of mtx (7.5mg weekly) alongside the anti-tnfs.

Hope your mouth is better soon Wonky and that you are able to have your first Inliximab next week. I will keep everything crossed for you!

Love Tilly xxx

dreamdaisy

The only anti-TNF I have had together with meth is the current one, humira. Both enbrel and inflixi were without the 'support' of meth and both stopped 'working' pretty quickly. I have to concede that the humira has reduced my inflammation levels very effectively, so I suppose that is a good thing - I was told that the meth helped the drugs to work more effectively, not that it would stave off the body producing antibodies too quickly, so thanks for that little gem, tilly, you learn something new on here every day!

I think, wonky, that you should ask about having your first infusion regardless - meth is still present in you, it doesn't disappear overnight. It never harms to ask. I wish you well. DD

dorcas

Hi Wonky

Oh I do hope the mouth ulcers disappear quickety quick so you can get re-started on Mtx and then ready for the first Infliximab Infusion.

Some great info. and advice from everyone on how to manage mouth ulcers and other nasties! As DD said... we learn something new here every day on the forum. :!:

will keep my fingers crossed that you can go ahead with your infusion.... but please do report any infections etc...as it is very important that the medics know; even if it means a short delay of a couple of weeks.

Iris xx x:rudolf

Wonkylegs

I think the mouth ulcer heard you all and has begun to beat a retreat x:)) x:)) x:)) x:))

thanks for all the advice and the support.

Iris - thanks I am very conscious of the need for them to know what has been going on, that's why I rang the rheumy nurse yesterday ..... trouble is that I don't feel at all well at the moment, but couldnt' say how much is missing the MTX, how much is a flare, how much might be an infection, and what might be from the increased dose of Naproxen, so am between a rock and a hard place!

be assured that they will be told all that I can tell them on Wednesday. I rang them today and thankfully they say a list of my current medication will suffice - the letter said to take all medication with me :shock: so I thought I'd need to pack my case again

Wonky xxxx

skezier

Hi Wonky,

Glad the ulcer is listening and retreating and so hope you soon feel better a well.

Can't do much to advise you but can eave you a bucket of ((((( )))))'s, hopes and feel better dwarfs. Slurps and love Cris xx