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  • #16
    thanks everyone! I hardly every get canker sores but cold sores, yep. I just got back from picking up denavir cream and valtrex pills to try and curve this outbreak. It's no fun feeling yucky on new years!! I actually thought I had a refill from the last time I had a really bad outbreak about a year ago and when I called my pharmacy they said I didn't so I panicked. But I have a refill on the ones I got today for that very reason!

    oh I also use biotene mouthwash, it's the only soothing thing for me when I get cold sores. It makes my mouth feel clean. Also, my sister mentioned using zicam's cold sore gel stick things...says they worked for her! I might try that next time!

    thanks again!!!
    best, Kate

    I am a generally happy 23 year old, newly diagnosed(Nov 2009), newly-wed living in Tampa.

    I graduated from college in Boston in May. And since then have been trying to get my pain regime for this disease under control!

    Medications currently taking:

    Elmiron (2 in the morning 1 at night)
    Benadryl (1 in the morning and 1 at night)
    Vesicare (1 a day)
    Prosed as needed

    I am constantly looking for alternatives to these medications to heal my body! I am open to suggestions (thinking about aloe, cystoprotek, accupuncture, etc) until then I am keeping my fingers crossed that elmiron works for me!!!

    I started PT last week....this consists of electro stimulation through my ankle of my prudential nerve.

    oh yeah I also practice yoga every day I can and am wishing I could work out like I used to!

    I am lucky to have an extremely supportive husband and family

    Thank you all for your help and support! It means more than I could ever say in words

    "Standing on a hill in my mountain of dreams, telling myself it's not as hard as it seems." -Led Zeppelin

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    • #17
      Oh yeah, I get them too. SOOO painful! I did finally notice a connection between them and one of the meds I take occasionally, Provigil. I only take it maybe 2-3 times a month, but I finally noticed that I always get them like a day or two after I take it. So, I am definately done with THAT med!

      Hope that yours pass soon. It hurts so much to eat, brush your teeth, and even talk when you have them! Hopefully your Dr. can r/x you some of the Lidocaine mouthwash or something to give you some relief.

      Sending hugs,
      Amaranthe
      I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

      D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

      Meds: Estrogel (due to total Hyster)
      The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


      (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


      John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

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      • #18
        Lysine

        Originally posted by ICtampa View Post
        ...does anyone else on here get frequent cold sores with IC? I have had them my whole life off and on but lately it is really frequent...

        ( can I get a break from something please!?
        Hi there I can relate well.

        I was told to take natural LYSINE.

        It seems the chronic stress really triggers mine and this Lysine helps to keep me calm and works in other ways I can't quite explain but surely others could.

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        • #19
          cold sores

          valtrex is what has worked for me. I have dealth with them all my life 39yrs, they have ruined some moments in my life that the cold sores should have not? like traveling places and you have to deal with these annoying mouth sores cant even enjoy myself, you know what I mean?
          Blessings,
          Ruth

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          • #20
            I too have mouth ulsers. I have had them throughout my life. I think they are from acid foods. Although I am not eating any acid foods now. I am interested in the SLS mentioned in the earlier post.

            I sometimes take a suppliment called Lysine to counteract them. This is supposed to be for fever blisters also.
            I have read where frequent sucking on candy can cause an outbreak because of the sugar. This might be true for me.

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            • #21
              Autoimmune Disease...

              Hiya, after reading a few posts on this forum it's easy to see that many people suffering from IC have got other autoimmune stuff going on as well. Unfortunately AI 's like to travel in packs!!

              People with autoimmune condidtions are more likely to be affected by IC, which I would also classify as an autoimmune disease!!

              A few that spring to mind are:

              CFS, Fibromyalgia, MS, Sjogrens Syndrome, Lupus, Sacoidosis, RA, Thyroid (Graves of Hasimotos), Celiac, Type 1 Diabetes, Chrons etc

              The problem arises when you are sero-negative(like me) ie nothing shows up in the blood work so it's difficult to make a diagnosis!!
              Immunosuppressants are often given to people with AI disease, plaquineil is the usual starter. Some specialists will treat patients with just symptoms...

              I'm seeing mine in May to ask if I can start on some med that will cut down on flares...not just IC but others too.

              Good searching,
              Lesley (New Zealand)

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              • #22
                Sores in Mouth related to IC

                Hi everyone, I'm new to the forum and pretty recently diagnosed with IC. I honestly don't think I've had a sore in my mouth - ever, not even a cold sore but since the problems with IC (about 6 months), whenever I have a flare-up my mouth has sores so I honestly believe they are related. Nothing else is new, no new meds. Stressed about the flare-ups though...

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