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Gilenya and Cold Sores anyone?!

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    #1

    Gilenya and Cold Sores anyone?!

    I've been taking Gilenya for 4 months with no adverse side effects...but I have just started my 4th cold sore on my lip in as many months. I normally get two or three a year, not one each month. I'm wondering if the med has anything to do with it because there is an issue with Chicken Pox (which is a form of herpes) and Gilenya, and since cold sores are also a herpes condition I'm wondering if they are related.

    I don't want to call my MS Specialist with this question as its not nothing major, I prefer to only 'bother' him with more important issues, I don't want to become a pain in his you-know-what!
    Possible MS 1993, RRMS, Dx 2007, SPMS 2013. Avonex - Oct '07 - Jul '12, Gilenya - Sept '12 to May '13, Tecfidera - June '13 to present. You see things as they are and you ask why..I dream of things that never were and I ask 'Why Not?!'
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    #2
    I do not get cold sores but mouth ulcers. never had a mouth ulcer until going on gilenya and now get them 1-2 times a month and they last 7-10 days.

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      #3
      I don't think you're bothering anyone. That's considered a non-urgent medical question, but it's still a good question especially since two people died of herpes infections in the trials - but not to worry, there were other issues. I'm only saying that you can't always be sure it's a dumb question.

      You can call the nurse and leave a message or just wait until next time.

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        #4
        Since going on gilenya a year ago I have been getting what appears to me to be acne on the edge of my lips. I have suffered from acne my adult life, but never on my lips. Just yesterday I was discussing it with my brother (unaware I have ms), and he is convinced it is cold sores. I have never had a cold sore, and am not sure if it is. They look and appear and behave like acne and are not on the lips, just the edge of the lips. If anyone can confirm either way I would be grateful.

        When you google "gilenya and cold sores/acne" it seems there is a connection. Gilenya has bought out cold sores in people that had never had a previous outbreak, and can make acne worse.

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          #5
          I've gotten cold sores occasionally since I was 18. Since Gilenya (my first DMD), I get them a little more often. I chalked it up to my immune system, not the G.

          Have u ever taken RX Valtrex for your fever blisters? Lots of people don't know it's out there. My doc wrote me a scrip about a year ago when I happened to have a fever blister during an appt. You take one huge pill at first sign and another 24 hrs later. That's it. Blister quits growing and is gone in a few days. It's available generic now and my scrip for 20 pills cost $10.
          Dx 3/4/12. Tec X 2 as of 7/7/13
          Weebles wobble and occasionally they DO fall down!

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            #6
            It's Gylenia. I never had them in my life and now I usually have 1 and sometimes 2.

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              #7
              Gilenya suppresses the immune system so it makes sense that if you can't suppress the herpes virus it can break out as cold sores. Chicken pox and cold sores are different kinds of herpes but they're both herpes so there's a connection there.

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                #8
                Mouth sores

                I jus started gilenya earlier this month and I haven't had a cold sore yet although I usually get them like once a yr but I have had several mouth sores or canker sores in my mouth I thought I read somewhere in the gilenya warnings that it would cause mouth sores or that would be a side effect but I'm not enjoying this at all

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