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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

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  • brenda05405
    brenda05405 Lisa_Batts

    Posted

    I was confused about folic acid thinking I could just buy it over the counter in the vitamin department, but was told take a prescrpition only
    • Lisa_Batts
      Lisa_Batts brenda05405

      Posted

      That's interesting Brenda because my pharmacist knows my meds without even looking them up and I asked him about folic acid and he said not to get them from him but to go back to my specialist. Maybe it's just when on MTX they like to monitor everything you do 😊
  • brenda05405
    brenda05405 Lisa_Batts

    Posted

    My insurance (Medicare) doesn't cover the prescription folic acid. I talked to the pharmacist who said there is a major difference in the two folic acids.
    • Lisa_Batts
      Lisa_Batts brenda05405

      Posted

      Now that's something I didn't know but I think it's one of the things that should be made clear by the doctors when first putting you on the treatment. After I tried to get it over the counter thinking it would help my side effects by upping the dose and had no idea it was different. Had they given it me what a waste of time that would have been 
    • maggie15623
      maggie15623 brenda05405

      Posted

      Hi Brenda,  I didnt know there were 2 types of Folic Acid.  Mine is on prescription 5mg but I can buy the same one over the counter too.  It is confusing.
  • mrsmop
    mrsmop Lisa_Batts

    Posted

    I am taking MTX and don't have ulcers because of that but I do have oral Mucous Membrane Pemphigoid, which causes lesions in my mouth amongst other places.

    The last time I saw my Consultant, he had a Jnr Doc with him and the Jnr had obviously recently spent time in ENT.  He told my Consultant that the ENT guys wore by a mouthwash called Benzydamine, so he prescribed it for me.  It is wonderful, it is an anti inflammatory with an anaesthetic effect and I can use it every 1½ hrs if necessary.  It certainly takes the soreness away.

    I don't know whether it would help your cracked tongue Lisa but it would certainly make it less sore.

     

    • mrsmop
      mrsmop

      Posted

      wore is missing its S!

      It should say 'swore' - oops!!

       

    • Lisa_Batts
      Lisa_Batts mrsmop

      Posted

      😂😂😂 the missing 'S' could certainly make a difference is some of the things I want to say to my doctor!! Thank you again. I have written it down and will get some. I am currently using Biotene which my friend sent me as my doctor offered no suggestions. It does help slightly but can only be used 3 times a day. 😊
    • Lisa_Batts
      Lisa_Batts mrsmop

      Posted

      Thank you again. I never expected when I joined this website to meet some lovely helpful people 😊 xx
    • mrsmop
      mrsmop Lisa_Batts

      Posted

      I noticed that you can also get a spray in the Benzydamine and I was going to ask for that too because I find that it is better to hold it in my mouth than to try to gargle with it.

      I hold it in my mouth until my mouth is numb, I then have to spit it out because otherwise it dribbles out!!

       

    • Lisa_Batts
      Lisa_Batts mrsmop

      Posted

      I think I will ask to try both. Very classy the dribbling bit sounds. I shall be sure to use that if out and stopping for coffee and there are no free tables. A little spray and dribble I bet I can get a seat!! 😂😂 xx
  • kim46236
    kim46236 Lisa_Batts

    Posted

    hi lisa

    the side affects of this drug are different for all of us i have for the last 12 weeks been having mxt injection of 25g, i at first had a sore mouth with ulcers but it seems to have subsided, my injections are for crohns, which has put it in to reminson, so fingers crossed, but i do feel sick on this, i tend to have my favorite foods in the fridge when i have a sicky moment, i have another 4 injections to go, and then will be put onto tablet form, but i had a severe reaction to anzothiopan, so i feel slightly aprehensive as the injections bypass the stomach and go directly to the kidney and liver, so with most of these drugs it is trial and error , hope you find some kind of results lol

    • Lisa_Batts
      Lisa_Batts kim46236

      Posted

      Thank you Kim 😊 my side effects were subsiding until my near disaster on Friday where the doctor prescribed me something which should not be mixed with MTX and I ended up in hospital. Not only that but what they prescribed knocked out my folics so back to stage one with side effects. At least I know they get better. I eat mini ice cream lollies when I get the nausea (but I think it's just an excuse to eat ice cream daily!!) thank you for your reply 😊
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