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    Cold sores....

    Hi all:

    So, I am wondering if any of you who are on Tysabri get cold sores?

    In the Tysabri literature it talks about how it is possible (but rare) to get encephalitis or meningitis caused by the herpes virus. (Although many people think it is 'gross' to have 'herpes' about 80% of the U.S. population is thought to have it). I hope that we are all adult enough to realize that and not look down on anyone claiming to have 'herpes' or who chooses to respond to my post.

    Was this a concern for any of you? It honestly has me a little more worried than the PML risk. I talked to my doctor about the connection of herpes with encephalitis and meningitis today. She still believes it is a 'remote' and unlikely risk. (She considers the PML still to be a greater 'risk' even though I am JC virus negative).

    I'm just wondering if any of you who might have cold sores have worried about this and what your thoughts are. (I'm sorry if I am giving anyone a 'new' worry).

    Given that approximately 80% of the population does have this virus, I am also thinking that a lot of people who are on Tysabri likely have it and are doing fine.

    I guess it is just reassuring to hear from others. I am so scared of PML / encephalitis / meningitis attacking my brain.
    RRMS Dx: 3/23/15
    (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
    Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

    #2
    Hi, I haven't had cold sores since starting Ty, but I did get a nasty case of Shingles within 6 months of starting. I'm only in my 30s, so I totally think the Ty brought this on.

    Comment


      #3
      Teekybird - I just posted a very similar question! Lol

      ADV1978 - oh noes! I'm so sorry!! That's one of my worries...getting shingles because it's considered a herpes virus also. I've already had them twice & I'm 35!! Did u stay on tysabri? How long before u were able to get another infusion?
      MS dx's 2000
      Tysabrian

      ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

      Comment


        #4
        Thanks Teeky. Yes, I stayed on Tysabri, and had my regularly scheduled infusion. So far, no more shingles but I did progress afterwards. No one can offer a better med for me, so I'm still on Ty.

        Comment


          #5
          More Responses Needed!!!

          Hi teekybird, although I am not on Tysabri yet I hope to be very soon but I have been getting cold sores almost every month and I have had shingles twice. So very good question! I hope you get a lot more responses.
          PEACE
          Tortis

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            #6
            ADV1978 - how long have u been on ty since the shingles? I never limped before I had this last bout of them.
            MS dx's 2000
            Tysabrian

            ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

            Comment


              #7
              tysabri and cold sores

              Hi readers:

              Well, to revisit this topic, I have now had 2 infusions of Tysabri. In terms of cold sores and other herpes simplex viruses and possible meningitis/encephalitis infections, at least my neuro says that these are also very rare. The drug company has to report any adverse reactions that ever happen to anyone basically. She did contact Biogen and ask for data on this and said that they really did not have anything extensive to share. She feels it is an extremely remote risk.

              I don't know if that is true, but of course hope it is as I am now on Tysabri. For a while, I was more worried about the meningitis/encephalitis risk than PML.

              I haven't had shingles. I have had mono. I had the chicken pox vaccine. I have cold sores/herpes simplex.
              RRMS Dx: 3/23/15
              (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
              Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

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