1. Community
  2. Bones, joints and muscles
  3. Methotrexate

Struggling on MTX and tongue ulcers

Posted , 9 users are following.

Lisa_Batts
Lisa_Batts

I'm struggling on MTX with so many side effects I've lost heart phoning my specialist. I have what they call a geographical tongue, cracked, swollen, ulcers etc. Does anybody please have any advice. Also since taking it I've had a 'tic' in my eye. This could be coincidence but is anybody else having this? Feel very alone and emotional 😞😞

0 likes, 30 replies

30 Replies

Next
  • michelle66138
    michelle66138 Lisa_Batts

    Posted

    Sorry to hear this. What av they told you to do av they said to continue. My face swelled up a little but they told me to keep taking them 
    • Lisa_Batts
      Lisa_Batts michelle66138

      Posted

      They have just told me to carry on but my tongue is so cracked, dry and sore and swollen at the back it is painful. I was sucking on baby ice poles but it's too sore for that now. I just can't seem to rehydrate it 😧
  • Bababoyd
    Bababoyd Lisa_Batts

    Posted

    Lisa I know how you feel and I was not even sure what was PMR, my spinial stenosis or METX.  I took it 2 months and though I must have every side effect thre is. I was so on edge and had a short temper, sores in the mouth ( gargeled a lot) bad head achs, lots of hai lost (had to get a wig).  Had lost some from pretz. So very tired and when I slept I slept so deep I could hardly wake up.  Exausted all the time. After all this It did not help bring down my SED. rate, I went up 22 pts. I was off it 2 weeks and started to see the change and now a month later those have all gone and I am back up on pretz.

    We are all here for you and I do know what you are going through, I often just sit and cry because I feel like I am going nowhere. Hard to share with anyone.  Hang in and know you are NOT alone.  I hope you have a much better 2015.

    • Lisa_Batts
      Lisa_Batts Bababoyd

      Posted

      Bless you. It is so comforting to know I'm not alone. My emotions are crazy. I too am exhausted. My blood count went from 10 to 20 so they took me off it for a week but they have now gone up to 23 and they have started me on it again. I can't make sense of it all. My hair loss has been minimal but the other side effects are horrendous. I too just start crying for no reason. When you say predz do you mean prednisone? It's just they have cut me down from 3 a day to 1 a day and I wonder if that is making it worse. Thank you for your words of encouragement and may you too have a better 2015 😊
  • brenda05405
    brenda05405 Lisa_Batts

    Posted

    Do you take folic acid..that helped with my mouth sores
    • Lisa_Batts
      Lisa_Batts brenda05405

      Posted

      Thank you Brenda. I do. Just 5mg weekly. I asked if that could be upped as I am getting severe side effects but they said no at the moment 😊
  • brenda05405
    brenda05405 Lisa_Batts

    Posted

    I'm taking 1 mg per day of folic acid and it was prescribed specifically for mouth sores
  • maggie15623
    maggie15623 Lisa_Batts

    Posted

    Yes mouth problems are a real nuisance.  I have been on Metoject for 4 years and reducing gradually BUT the reduction has not improved a mouth lesion on the lining of my mouth and the ulcers.  I take the folic acid 5mg every other day but that has no effect although it seems to help others.
    • Lisa_Batts
      Lisa_Batts maggie15623

      Posted

      Thank you Maggie. I have to phone my specialist Monday as I have broken out in sores on my hands now and am going to ask him again about upping folic acid. The one thing I have found that helps with the tongue is cold milk! I know. Sounds crazy but a couple of mouthfuls seems to coat the tongue 😊😊
  • lucynewas
    lucynewas Lisa_Batts

    Posted

    Gargle and mouthwash with 1 drop of tea tree oil in an egg cup full of water twice or three times a day.  worked for me.
    • Lisa_Batts
      Lisa_Batts lucynewas

      Posted

      Thank you Lucy. I will definitely try that. I will try anything. Bless you for sharing 💕😊
  • snowycat
    snowycat Lisa_Batts

    Posted

    Hi, I've been on mtx for 4 years curently back up to 20mg, was 25mg and got down to 12.5mg but decease developed hence back up.

    I started with one 5mg of folic acid on a Wednesday after taking mtx on Sunday evenings. Side effects and mouth ulcers got worse so I now take 5mg folic acid on Tuesday, Wednesday and Thursday. I'm pretty sure it helps as if I forget I get a mouth ulcer!

    • Lisa_Batts
      Lisa_Batts snowycat

      Posted

      Thank you snowycat... Great name by the way 😊 I have my blood work done tomorrow. Providing it comes back ok I'm going to mention this to my specialist. Thank you for sharing 😊😊
  • Bababoyd
    Bababoyd Lisa_Batts

    Posted

    I was on Metx. I took the Folic Acid every day except the day I took Medx. I think it did help some with with some of the problems, lessen the severity of the bad effects. I was only on it 2 months and it was not working so I was taken off the pills.
    • Lisa_Batts
      Lisa_Batts Bababoyd

      Posted

      Oops my swollen fingers hit return before I was ready. I hope you have now found some medication which helps you and thank you for sharing 😊😊
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.