hi
hs anyone got any advice about what to do about a sore tongue and mouth as a result of taking mtx. i am obn 20mg and take 10mg of folfic acid a week.
they are bad at the mo and getting me down. as it everything else feel so tired i could cry.
tracey


Hi Tracey,
Sorry to hear about the sores. You should call your rheumy and ask if he/she has any ideas. I was taking 2 mg daily, but I was having too much hair loss. So my rheumy suggested taking 2 mg daily except on mtx day. No folic acid on mtx day. Then the day after take 2 mg in the morning and 2 mg at night, kind of like a super boost.
Anyway, I think there are more options that you have, so don't give up hope!


Try Rembrandt toothpaste....Rembrandt for Canker sores....but all Rembrandt toothpastes are good though. Less abrasive than any toothpaste on the market. My hubby is a Dentist and he suggests it to all patients that are troubled with mouth ulceration.... me being one!!!
My Rheumy told me to double up on my folic for awhile too!


There is a product out called Rincinol PRN ( made by Butler) it is for overall mouth sores.
Also have you changed your toothpaste recently- sometimes people are sensitive to different ingredients- Stay away from tarter control and whitening types-
Also a deficiency of B vitamins can contribute to mouth sores, check with your MD and see if it's OK to take a B complex vitamin. The rinse should help in the meanwhile.


Hi Trace
Sorry to hear how poorly you are feeling. Sometimes it is such an effort to do anything - the meds can be worse than the PA.
Do you need to be on 20mg. Perhaps you may be able to reduce a little. If you are in the UK get some marmite (although it can make ulcers hurt). I don't know if it is the yeast or the b vitamins in it but it is supposed to help them. Do you take your folic acid 48hrs before your MTX otherwise it doesn't work as well.
I hope you feel better soon
Love Kay


I had mouth sores when I was first on 12.5 mg, but only in the beginning. They did go away and have stayed gone, as have all the side effects I had at first, including fatigue.
I called my dentist, who prescribed a steroid gel that I put on just at night. It worked immediately - though it took a couple of days for the sores to disappear altogether, the pain left after one application.
I take a prescription called folgard which contains 2 mg of folic acid plus B-12 and B-6. If you have been steadily increasing your MTX dose, you may need more folic acid.
How long have you been on MTX, Tracey?


hi
thanks for all the advice everyone.
i have just started using a whitening toothpaste so will ditch that. also as from the uk will definately eat more marmite as i like it and it has loads of vitamin b.
i do take folic acid just before the mtx. i've been on mtx for a year now and i still feel rubbish. my rheumy is advising me to keep going up 2.5mg evry six weeks. i don;t like it as i don;t feel any better my crp is still high and i am really tired and keep getting a sore mouth.
i go back in july my biggest dread is that they try to make me go up to 30mg. the only thing that has helped is a cortisone injection i has last time i went and then i felt better.
i am so fed up at the moment. i'm a teacher and i now can't write properly at lenght without being in agony even when i wear a hand splint. sometimes this illness gets you down.
tracey


Hi:
I too had horrific mouth sores and a cracked and sore tongue with mtx. I think that I am one of those people that get all of the side effects of meds. Anyway, my doctor prescribed a lidocane gel to swish in my mouth. This will make your mouth numb, but it does help. I had this all of last summer when I started taking mtx. I take 17.5 mg. per week over three days. This seemed to help. I think that taking it all at once was just too much for me. I still get the diahrea (?), fatigue, and headache, but I take the mtx at night and that also seems to help. I take folic acid 5 mg per day, every day. The mouth soreness eventually worked it self out, still, it took probably 5 months. Hang in there, it will get better.


Some things I've noticed for me personally over the 4 years I've been on mtx:
1. Oral pills seem to cause the most side-effects
2. Injections cause the least side-effects
3. Splitting the dose
A. According to mtx instructions, mtx should all be taken in a 24-36 hour period. Otherwise, liver function could be more impacted.
B. Splitting up the mtx dose does seem to improve some of the sore mouth side-effects, but the split might be better happening in a 36 hour period regarding liver function.
I know it's frustrating that these medications and dosages are all so individual.
Don't lose hope though!
Best wishes!


Remember, anything bigger than a handful can result in a sprained tounge!


Tracey - upping the dose 2.5mg every 6 weeks is, I think, awfully hard on your body. It takes at least 6 weeks for an increase or decrease to affect your symptoms.
Try taking 2mg of folic acid every day for a couple of weeks and see if that helps - plenty of docs prescribe it that way routinely, so it can't hurt.
Why don't you tell your doc you want to stay at 20 for 3 to 6 months. That way, you can give it a chance to work, give your body a chance to get used to it, and give yourself a chance to accomodate.