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Mouth teeth ulcers

Hi Guys
Been on methotrexate since May24. Low dose then upped to get me off anti inflammatorys and pain killers. After 6 months on 6 x 2.5g a week I was going well. Upped to 8x 2.5g I was off anti inflammatorys and pain killers for a month. Felt fine.Minor stiffness went walking everyday. Slept great. Then all hell broke loose and my mouth turned into a crime scene. Ulceration under bottom lip, top lip and under my tongue. My gums felt sore. Then I lost a tooth in the front bottom jaw. Then another at the top. I couldnt eat properly. I gargled with salt which is agony. I just dropped methotrexate to 2x twice a week to allow ulcers to heal. There is a product called Kenalog Orabase made by Aspen pharmaceutical that is a lifesaver to fast cure ulcers. It took 5 days. Ive gone back to 6x 2.5g methotrexate and im coping with no painkillers or anti inflammatorys. The ulcers are gone, but the odd feeling gums and mouth feels like they just lurking to come back. Anyone else in the same boat?

  1. I’m so sorry you’re having to go through that. Thank you for taking the time to share this with the community. Sometimes this does happen when taking methotrexate and it’s usually due to the medication depleting folic acid. Has your rheumatologist suggested taking folate/folic acid tablets when taking methotrexate? As this can help stop the side effects such as ulcers from occurring. Your doctor would best be able to tell you what to do and what your next approach can be. Some have had to stop the medication because of this and others have been able to continue taking it factoring in their levels of folic acid are optimal. There is one gene; methylenetetrahydrofolate reductase (MTHFR) gene and mutations in this can increase the risk of toxicity from MTX. The ulcers etc can often be a byproduct of that.

    Here is a recent thread that may be of interest for you. I’m not sure if you’ve talked about this with your rheumatologist yet but it’s something to look into for sure. -Effie, team member

    https://rheumatoidarthritis.net/forums/has-anyone-with-ra-and-mthfr-gene-mutation-had-problems-with-medicines

    1. Thanks Effie, I am taking folate everyday I think the 8 x 2.5g dosage is what tipped it over and caused the ulcers and sore mouth. As soon as I reduced the dosage and treated with Kenalog Orabase I got it under control. Im only on 6 x 2.5g now and its OK. I also supplement with Vitamin B 12.

      1. You’re welcome. Awhile back when I first started Mtx I had an ulcer in my mouth but I found out I needed a much higher folic acid/b12 combo than I was taking. It happened when I increased the dosage too at the time but with a better idea of what my body needed it didn’t happen again. Sounds like you have a good idea what to do. It’s all trial and error unfortunately. Hope you continue to feel better. Hang in there. -Effie, team member

      2. Hi . On top of the excellent information from Effie, I just want to note that if you feel that the issues are too much or that the methotrexate isn't adequately controlling your RA (particularly with the drop back down in dosage), there are a number of other treatment options available. This article from our editorial team gives an overview of the various medications for RA: https://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra. Just thought this might be helpful to inform future conversations with your doctor. Best, Richard (Team Member)

    2. Thanx for the info. I am in the 3rd world. Eastern Cape South Africa. There is one Rheumatologist for a provincial population of 5 million people. Other than methotrexate which is dirt cheap the biologicals are so expensive they are out of reach. The state medical system is non existant and medical aid is very reluctant to spend money on biologicals. So far I am coping its only a year since diagnosis and I am learning more everyday .Most grateful.

      1. Hi . Thanks for providing the additional context. It is understandable that methotrexate would be the go to medication. It's long history and lower price is the reason it is the initial treatment in most cases around the world. Glad the information has been helpful and please feel free to keep us posted on how you are doing and to ask additional questions. Best, Richard (Team Member)

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