Hey, something new to redirect my attention from foot, knee and back pain…Mouth Sores!
My tongue has the feeling like after you drink something too hot, have a bad taste (sort of metallic) in my mouth, upper gums seem swollen and too sore to floss my teeth and my upper and lower inside of my lips are tingling/sensitive. Swishing with salt water helps a bit. It looks a bit like when my g’son had thrush. I just quit Sulfasalazine 10 days ago, and now only on MTX 25mg/week. (Since March 2018) Its very uncomfortable and not improving after 5 days. Now I need to decide if I should fill my new prescription for Leflunamide. Haha! When I just typed “prescription”, spell check changed it to “persecution”, go figure! Any experience with this mouth issue out there?
Mouth sores are a fairly common side effect with Mtx I believe. How much Folic Acid do you take - that may be the key to dealing with them. 25mg of Mtx is the largest amount we can take for inflammatory arthritis in the UK - still a modest dose of this drug, but reduction might help. Stir that rheumy from her slumbers.
You’ve seriously disappointed me, from the title of your post I thought you were going to give it to us with both barrels! Still, certainly got my attention!
I guess the title worked…sorry for being sneaky! I take a multi-vitamin that has .8 mg folic acid and add a 1mg tablet per day. So, do I go off of the MTX to see if the mouth sores clear up? I can’t get my rheumatologist to answer questions even through her secretary. Trying get in with my GP…might be a route to some sound answers. Have most people with PsA had a PsARC examine? It sounds like its only as reliable as the experienced hand using it.
If you cannot get hold of your rheumy, do try your GP. Chances are they will have a lot of inflammatory arthritis patients on Mtx.
Looks like you’re on the right amount of Folic Acid. Are you drinking plenty of water?
Between you, me and the gate post, I’d probably reduce the amount of Mtx if doctors wouldn’t advise. But I’d also send a message to my rheumy complaining that my request for help hadn’t been answered and notifying them of my actions. I do think your GP will have some thoughts on this, though.
Most people don’t hear about PsARC from their rheumys. Though it (or something very similar) should have informed their examinations. If you do a search for PsARC here you’ll find quite a few relevant discussions.
Thanks Sybil. Just back from the GP. She thought it looked like a bacterial infection and prescribed amoxicillin suggesting i get a dentist to look at it. The dentist said I have a canker sore likely from my body having to readjust to the recent stopping of Sulfasalazine. Said antibiotics aren’t needed, it should clear up in 5-10 days but I could see it recur due to the MTX. He seemed reasonable and informed. Before the dr appointment, my rheumatologist office called to tell me to stop Leflunamide…which I didn’t start…but I need to be on to fulfil my DMARDS attempts before moving on…sheesh! I really don’t have time for PsA…I have better things to do!
Eh? But you’ve ‘failed’ 2 DMARDs … is that not enough? In a way, you’ve done 3 'cos Leflunomide is a no go in the circumstances.
Ugh. Sorry.
Okay, you’re still on Mtx but if the mouth sores don’t go you’ll surely be deemed to have failed 2 DMARDs. It is not working out with the traditional DMARDs on quite a few fronts.
Brilliant title for a discussion. Let’s hope your dentist is right although I never had any issues stopping sulfasalazine like that. Just none. Had very few issues starting it or stopping it really. It was just a pity it reacted badly with a biologic for me. I loved it otherwise.
My guess your issue is solely to do with the 25mg of mxt frankly. I assume you’re not taking mxt with the antibiotics??? You ought not to as far as I’m aware.
You’ve ‘done your time’ on DMARDs @Amos. For any PsA protocol globally. My time was ‘done’ on the basis I couldn’t tolerate mxt - only took three doses. One lot of tablets where I threw the remainder back at the pharmacy. And a year later two injections where I also then threw the remainder of the pens back at the pharmacy. And 18 months of sulfasazine where a biologic was added in after 7 months because it had stopped working on its own. I point blank refused leflunomide. I’m probably too assertive as a patient though. 
Not very easy to manage at all. Time to kick ass with your rheumy and move on.
And yes PsARC is only as good as the person doing it. Preferably the same person all the time too. That’s why you need an experienced PsA rheumy to undertake it.
Amos, I’m with everybody here: you’ve done your time with DMARDs, time to move on and discuss biologics with your rheumie. Mouth sores may be better news than you think. (Yeah, “mouthing” off … LOL)
Do you or can you travel, like to Toronto for a couple of days? There’s a fabulous second-opinion research clinic there. Sounds like you are at the perfect crossroads to consult with them if you possibly can. One visit there changed the course of my disease and my life. One visit.
Think about it.
Thanks for the advice and encouragement. My GP prescribed antibiotic for the mouth sores and the dentist said “Don’t take them”. I’m not. Rheumatologist got back to me today (via the secretary of course)…”Don’t take the Leflunamide or Sulfasalazine. Stay on the MTX and up your folic acid to 5 mg/day until next appointment in 13 weeks.”
My end of December flare was just that and things have calmed down so I only have a minor limp due to one knee pain and both feet issues. Never had swollen joints but my feet feel like they have been beaten in a Turkish prison…not constant but waves. (I might have watched “Midnight Express” recently) 
The main mouth sore is moving towards better as I have been rinsing with salt water. But I think a new canker sore is about to emerge. Is that too much folic acid? Thanks much!
Just checked the strength of my Folic Acid tablets. Each one is 5mg. When on 25 mg Mtx, or even 20mg, I took 5 mg Folic Acid every day except Mtx day. I’ve had quite a few rheumys now and I think all recommended that dose - I reckon it is very likely standard practice.
See what 5mg daily does, I think you may have been taking too low a dose for 25mg of Mtx.
Yep, time for biologics. But if you can get on well with Mtx that’s all to the good as Mtx is so good at propping up biologics. And adequate Folic Acid is vital for tolerating Mtx.
My folic acid is 5mg daily (except MTX day), it can help. It’s also worth noting that spondylarthropies, including PSA, are often associated with canker sores themselves, so it might be a side effect of the disease, rather than the meds.
APPLY BRAKES I KNOW EVERYONE IS TRYING TO HELP BUT…
Not all folic acid is created equal especially the OTC versions but even if it were 1.8 mg is not nearly enough. Folate (the common OTC version) and folic acid while both forms of Vitamin B-9 are very different creatures and folate is not generally taken with actual Folic acid as they aren’t great friends and compete for “the job” and neither gets the job doneand can create some real problems
Folate intake can mask vitamin B-12 deficiency until its neurological effects become irreversible. This isn’t a DIY Project or something you can figure out with Dr. Google
You need talk to your Rheumy. Depending on the practice “practices” most consider folic Acid a “Leggo Drug” ie everyone needs a different amount and the right amount is determined by the individual.
One hint BTW is to look at your blood counts if they are on the low side of normal or even just short of normal but not Anemic and that keys up with starting your MTX or onset of symptoms like mouth sores, you can almost make book you aren’t taking enough Folic Acid.
Be very careful with ANY supplements. I swear my doc spends more time lecturing me and checking mine than she does checking joints…
TJ
I think that may have been covered, a few posts back we heard that the OP’s rheumy had told him to up the Folic Acid to 5mg daily till the next appointment.
Sorry missed it…
TJ
Thanks for all the input. After about 1 week of 5mg folic acid, the mouth sores are completely gone. Coincidence? Who cares! I can chew again…I’ll attribute it to the increased dose of folic acid.
Thanks Seenie, due to limited finances, a trip to Toronto would be out of the question right now. But I guess if things get real desperate it might have to happen. AND, Winnipeg has nicer winters than Toronto!
Hi Amos, I have had similar problems with mouth ulcers on and off over the years of psoriatic arthritis, which makes you feel very down in the mouth, pardon the pun lol! I get to the point where I don’t want to brush my teeth as the brush catches the ulcers and makes them even more painful. Have you tried Corsodyl Mouthwash Mint 600ml? That has helped me, fingers crossed you can get something to help sooth the pain
This may seem off topic but when the immune system is very low we get an overgrowth of candida. It causes mouth ulcers, metal taste and fungal growth in areas like groin and feet. Have a look at candida arthritis. I had a cold which wiped out what fight I had left and had all the symptoms. I was sent to dermatology who diagnosed candida overgrowth and was prescribed anti fungal. Two weeks and it was gone. As for lufludamine it has been the best treatment I have had and works for me. Once you go on to biologics there is no turning back, it’s a cycle of changing every time your bady gets resistant to them.
You said - Once you go on to biologics there is no turning back, it’s a cycle of changing every time your bady gets resistant to them.
Yes and no. There are people who burn through biologics, and it may take a while to find the type that they won’t burn through. But there are plenty of people who are on a biologic for an extended period. I think I’ve been on my first one for 7 years already.
Also, one can stop taking biologics. Granted, they’re the best med for slowing disease progress, but many people use a combination of dmards with great success.
Amos, that’s just a little bit of information to tuck into your file. You never know …