Hi guys,
Has anyone suffered from an ulcerated mouth from methotrexate??, I've had ulcers all over my mouth for about 2 weeks now, do I need to contact my doctor?
They hurt, and I've had a bad flare up 😔.
Hope everyone is having a good week
Cydney xx
Im afraid i did yes and numerous other infections large and small, raised it with consultant who said its one of known side effects and unless severe basicalky wasnt concerned. But it carried on so long and perforated ear drums due to ear infections etc that in the end they took me off it.
Oh, I've had a sore throat and pain in my Ears too. The tablets make me sick, I don't want to contact my doctor and they think I'm being dramatic. I'll see how they go.
Thank you Leonwp x
It's a common side effect Cydney, usually due to not replenishing enough folic acid so if there's room to ask if you can increase the days you take it? Not taking your MTX dose in one go may ease them as well so you're not bombarding your body, I used to take mine with meals throughout the day. Or, if you feel it would help you could ask to change to injections, many find side effects are eased as it avoids the gastro issues. You could also try washing your mouth out with salt & warm water, gargling may help too. I'd have a word with your nurse being newly diagnosed, see what she thinks is best for you at this time.
They've doubled my dose of folic acid, and I have split the dose to have it with all my meals.
I think I will ask about the injections- will I have to have someone else to administer them?, I'm washing my mouth out with warm salty water religiously.
Thank you. I guess where my immune system is so low it will take longer to recover!
Cydney x
Oh good. I'm on 17.5 mg & take 5 mg folic acid every day except the day I inject. You may find if you've only just started tablets they'll ask you to see if the side effects subside the longer you take it. If they are intolerable I would request changing to subcut. If they will swap to subcut you'll be shown how to do your first one at least then you do it yourself. It's no biggie, it's administered by a pen, very quick & painless. Whilst MTX does suppress the immune system it's nowhere near as much as say biologics so I'd think like me you'll be a bit more susceptible to stuff going round but no need to be overly worried. I carry around hand gel & it seems to work as I've not had any nasties of note recently.
It sucks!!, hopefully one day there will be a cure. Hand sanitizer is my best friend!, I have it everywhere I go.
I try not too worry, some days are better than others X
I put up with the side effects on tablets for longer than I should have really but because it worked so much better than my previous DMARD I was bothered I'd be taken off it! How green was I? It was only when a new Consultant said he thought could be better controlled I decided to go for subcut & been on it coming up to 7 years.
I too had enormous mouth ulcers on MTX. I asked my dentist about them and he advised scrupulous cleanliness - brushing after any food, rinsing with a mouth wash - and using Orobase to cover them (available from a pharmacy). I was already on extra folic acid. When I continued to suffer, his advice was to stop the MTX. As I was having other unacceptable side effects (sickness, nausea, diarrhoea and brain fog) I discussed it with the Rheumatologist and came off it.
I had bad mouth ulcers on MTX too, but swapped to injections and they went away and (fingers' crossed) have never returned. During the time i had them Boots sugar free throat lozenges with antiseptic were my best friend. MTX did also make me feel sick for the first couple of months, but that slowly wore off and its now worked very well for me for the last 6 years.
It's a difficult balance trying to work out whether it's worth persevering with a new med, or whether you have to throw in the towel and ask to try something else. We're each a bit different so only you can decide.
I've bought some gel that's meant for tooth ache but it numbs my mouth so it's my best friend at the moment!!, I guess I'll just see how I go!
I didn't have ulcers but I had really sore teeth, in fact I thought I had an abscess. I had the dentist x-ray it but there was nothing there. Increasing my folic acid seems to have fixed it though and I'm not getting any other side effects from mtx either since then.
I joined this forum about a month ago as I too was suffering from mouth ulcers due to MTX. I trawled the forum looking for 'cures' as my Consultant said there was no solution but to move to Biologics as I was already on 5mg folic acid every day except MTX day.
I made a list of all the 'cures' that were recommended. I then took the sheet to my local Pharmacist who said don't waste your money. Mouth ulcers and a sore throat are a common side effect just rinse your mouth with saline (salt water) as many times of the day you like.
In 3 days the mouth ulcers disappeared - no thanks to my Consultant once again.
I asked the Pharmacist why one gets mouth ulcers. He said MTX suppresses the immune system (as we all know) - your mouth is an 'unclean environment' - you can't fight infection as you once did - hence you get mouth ulcers. Thus the saline does the trick cleansing the mouth.
I rinse with listerine every night. Eventually your body gets ahead of that nasty side effect but it is not a good one. Best wishes for remission.
Sorry, I havent read all the other replies but here is my experience with this:
I had ulcers early on which cleared up by themselves after a few weeks. I also had a very sore throat on the left side. Couldnt swallow without pain, and lots of ear pain too.
I have been taken off mtx for other reasons now, but the throat pain persists. It also didnt go away even with 5 mg folic acid each day. Rhuemy thinks now that its a manifestation of the disease (I have Psoriatic Arthritis).
Hope you are feeling better soon.
I had a really sore mouth in July which resulted in me going to the dentist. For me that was major do not like Dentists. It's the smell: ). Anyway she said the roof of my mouth was covered in ulcers. Prescribed difflam mouth spray. This cleared them up on about 5 days. Had just had a cold and upped mtx to 25mg injection. Ulcers returned mid October again another cold. Really bad this time spray not as effective. Dentist6 diagnosed a rare condition called Steven Johnston syndrome. It was triggered by a virus, also got cold sores. She gave me difflam mouth wash. This helped. Also said when healed to use corsidol mouth wash. The general ones are a bit harsh if you get ulcers. I did mention to rheum Nurse last visit. She just said it can be mtx too. I also take 6 a week. Just to carry on.
I think you have had some good suggestions and I will try the salt water.
Do hope they subside for you quickly.
Hi. I have had mouth ulcers but not so bad as you I think.
I have found drinking extra water in the days after the M day helps a bit plus folic acid 5 days at 5 mg.
I get a croaky voice after the M day and thought my mouth must be drying out and letting mouth ulcers start - just me guessing though.
Good luck !
I got croaky voice too.
I really wonder why some people suffer so much on Mtx & others sail through taking it? As it has been around for so long you would have thought there would have been much more research on who has experienced what side effects.
I took it for 7 years + Folic acid with no side effects at all......and no pain.....I really thought I was set for life.
Then out of the blue I was dizzy,nauseous, felt as if my head was exploding & had terrible headaches. So had to stop taking it.
Then went on to Arava.....6 months later same symptoms.
Just had second infusion of RTX........back to square one.....I'm stiff all the time & have pain all over.i'm hoping this is just a "settling in" phase. Seeing rheumy next week.
What wouldn't I give never to have even heard of RD/RA!
I also had sore mouth...tell your Dr. .it is one side effect. At least for me.
Remember if you are going to salt water a go, don't just swill and spit. Try to hold the saline in your mouth for say 2 mins. I've found that method to be more effective.
I had them too. My nurse said to really swish water and drink it after taking the pills. The side effects in my stomach was too much to deal with along with the overall feeling of having the flu the day after. I switched to injections and it helped a lot. In the US I have to load the medicine myself. I also had to start sulfa with it and now I'm getting the sores in my mouth and cold sores on my lips. I hope this helps if nothing else you're not by yourself.
Lisa
I had mouth ulcers on methotaxate they increased folic acid and was fine
I was PUT on it but had to be taken off it because I was braking out on my arms . the doctor put me on arava. it's been 5 days now . don't know if it's working yet
Good day my son takes 7 tabs of metho and takes half in morning and the rest at night.
Folic acid on the other days ... 3 in total... it has help him... you will have to stop meth when
you have infection.... Look up coconut oil mouth pulling .... it alleviates the mouth.
Pray all will be healed
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