Help with mouth ulcers! I have taken methetrexate for over 1 1/2 years without any mouth ulcers. Then a few started popping up. I upped my 1

[mainstreet]

Mg folic acid to 2 mg daily. I used magic mouth wash and a dental paste. I finally went off the mtx because they were awful. Been off for 5 weeks and they are worse then when i was on it. Has then happened to anyone? I'm still doing the mouth rinse and paste but they are awful. Any suggestions?

[nomoreheels]

Are you in the US? I ask as folic acid in UK is normally prescribed when taken with MTX in doses of 5mg & I think I'm right in saying the US guidelines recommend 1mg. I'm in the UK & take MTX 15mg injection weekly & have 5mg daily except MTX day which has lowered my side effects dramatically. If MTX works in controlling you & it's the side effects that you're having which has prompted you to stop taking it I'd have a word with your Rheumy & see if he would let you take a higher dose folic acid. He may not if you're in the US as he has to follow guidelines set in your country but without asking you'll never know. As a matter of interest what, if you've withdrawn MTX, are you taking now to control your RD? It's possible that another drug could be the cause. Just a thought.

[mainstreet in reply to nomoreheels]

I am in US and rhuemy says there's no need to take more then 2 mg. I started sulfasalzine and within 5 weeks mouth ulcers are worse then on mtx. I stopped sulfasalzine yesterday and now i'm just on 10 mg areva and 15 mg mobic. We'll see if that controls the RA. Mtx did work in controlling the RA. I tried 5 mg a few years ago while on mtx when mouth ulcers first started. But that didn't work.

[nomoreheels in reply to mainstreet]

Thought that was the case & you were in the US. 5mg as prescribed here can be effective as I have found & some Rheumy's think 6 times a week beneficial in reducing side effects but others prefer to prescribe the same mg but on fewer days. Unfortunately your Rheumy has to follow ACR guidelines so shouldn't prescribe anything other than they recommend. I have no experience of leflunomide which I think I'm right is Arava but have taken meloxicam in the past before changing to etoricoxib & had no problems with mouth ulcers when on it. Maybe another member in the US will see your post & offer you advice which you can take up with your Rheumy regarding folic acid as treatment there is in some areas different to here. Alternatively is there another US site you could have a look at? I believe RA Warrior is well thought of & though only had a quick look myself & not of great interest to me it could help you.

[mainstreet in reply to nomoreheels]

Thanks for your response

[earthwitch]

You can get mouth ulcers from several other autoimmune conditions too -I know I got them really badly with coeliac disease before it was diagnosed. Definitely report them to your GP, and ask if you need to see a specialist again.

[MarshaM]

On mtx, plaq, Humira, 1mg folic acid. Couple weeks ago was forgetting to take folic acid daily and got a sore in my nose that lasted a couple weeks and saw a post on this group about nose ulcers and realized I had been forgetting to take folic acid regularly. I started taking it as prescribed and the sore went away w/in a week.

[mainstreet in reply to MarshaM]

What medication is plaq?

[MarshaM in reply to mainstreet]

Plaquinel aka hydroxychloroquine

[mainstreet in reply to MarshaM]

I've discussed starting plaq with my md as our next med. Do you have any side effects? Is it effective for you?

[MarshaM in reply to mainstreet]

Sorry for this long answer. No side affects except constipation. I started with Plaq in Dec 2013 and noticed no help at all. Then Doxycycline was added for 30 days at the end of Jan 2014 because I had 2 Lyme tests that came back Neg/Pos an Neg/Neg, so they decided to cover all bases just in case. Plaq and Doxy are common course for Lyme. It didn't change anything and I was still in a great deal of pain joint inflammation and felt like it was getting worse. At the beginning of Feb Mtx was added to the cocktail and still I didn't notice any change for the better. In April I got a new Rheumy who said I was on the wrong dosage of Plaq (too high as I had lost 20lbs from initial diagnosis) and the Mtx dose was too low. She lowered the Plaq to 1 every other day instead of 2 twice a day. Upped my Mtx from 4 once a week to 8 once a week. She also drew 20cc of fluid from my left knee (I could barely walk w either knee) and gave me a steroid shot in the L-knee. Over night the steroid traveled throughout my body and brought the inflammation down to 0 and she started me on Prednisone for 30 days. Felt human once again. She also asked for bloods every 2 weeks and now once monthly to monitor internal organs/affects. The only side affect I've noticed is constipation (both Mtx and Plaq say it can cause). But now that summer is here I'm eating plenty of plums from my tree, and peaches and cherries from the farmers market and I'm regular daily now. (once daily Slippery Elm and Aloe capsules also help keep things moving)

I started the Humira on May 20 as she said I have a very aggressive form of

RA and wants to stop any joint damage before it begins. I notice my fingers are stiffening and knobby knuckles are starting. Was originally diagnosed w/ symptoms last August 2013. Never had any problems previously. I'm 62 and the orig Rheumy said I'm kind of old to be getting it now. I'm back playing tennis and biking as of this month June. I can only assume that the mtx, plaq, have kicked in to stop the RA from advancing as they can take up to 6mos to begin to work and are usually taken in combo with ea other. Not sure what the Humira does but it sounds pretty scary too,

[bevie]

Hi I suffer from mouth ulcers at times. My dentist suggested I get my Vitamin B12 levels checked at my gp's.

Bev

[mainstreet]

Thanks for info. I had started taking sulfasalazine 5 weeks ago whem i went of the mtx. My rhuemy said that mouth ulcers is not a common side effect to the sulfa. But then i read and it can be. So i'm guessing this new crop is from tje sulfa. So i'm going of sulfa. I'm on 10 mg areva and 15 mg mobic for now. Plan is to see how that treats the RA. If not, we'll consider the plaquenera (sp?- the maleria drug) amd if that doesn't work then we'll habe to go to injections (humera or embril). I have been trying to avoid injections because of the possible cancer side effects. Any thoughts?

[mainstreet]

Thank you for this information. It is really helpful. Good luck!

[joan_w]

I am in the UK and we take 5mg of folic acid. I now take that daily except for MTX day and found that it almost stopped the mouth ulcers. I had them constantly when I only took 5mg folic acid 2 days after MTX which is what my consultant originally told me to do. Now I only get a few ulcers a year.