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    Gilenya and Shingles?

    May I please ask two questions for a friend of mine?
    She's 40-ish, has been on Gilenya for a year and doing well.


    1. Can she get a Shingles booster vaccine when she turns 50?
    My friend is concerned that she might be at risk of Shingles because of the medication.

    2. Would she ever be at risk of Shingles even with an extremely high antibody count against the Chicken Pox?
    Her Neuro had some blood drawn before she began Gilenya and it showed she did have an unusually high antibody number against Chicken Pox.
    Because of that, her Neuro believes she is not at risk.

    Any ideas??
    Thank you for any thoughts and input!

    #2
    Maybe I meant white blood cell count rather than antibody?

    All I know is her Neuro read some numbers after haver my friend's blood drawn.

    Thanks again for any input!

    Comment


      #3
      I asked my neurologist about whether or not I should get a shingles vaccination since I'm younger than most people who should get them. She told me that recent studies show it hasn't done anything to help prevent shingles in the elderly patients who were at risk. She told me it probably wasn't worth my time.

      Comment


        #4
        That's super interesting.
        Thanks for replying to the question.
        I'm the friend who asked to have this question posted.

        Comment


          #5
          Shingles happens mostly in older adults who have had chicken pox when they were kids. The chicken pox virus does not go completely away, but rather "hides out" in the central nervous system for decades, then reappears in the form of shingles when one's immunity wanes in later years.

          I am surprised a neurologist would have said that the shingles vaccination "hasn't done anything" to prevent shingles in the elderly. The studies have shown the vaccine to be very effective in prevention of shingles, as well as post-herpetic neuralgia (lingering pain at the site of the shingles lesions, lasting long after the blisters clear) in adults over 60, and more recently, adults over age 50.

          Perhaps the neurologist was referring to protection of younger patients in their 30's and 40's; the vaccine is not yet FDA approved in those younger ages.

          It is a live vaccine, so it is not advised for those currently taking immune suppressant medication. My neurologist wanted me to get my live vaccines (shingles and yellow fever) at least one month before starting Gilenya, and if I were to stop Gilenya, he said wait 3 months after the last dose before getting any additional live vaccines.

          I had the shingles vaccine a month ago. I have known people who get shingles and they are miserable. I want to avoid that myself if at all possible; my concern was that on Gilenya, I would be immune suppressed and more likely to get shingles, but then I am over 60.

          Comment


            #6
            Thank you Onlyairfare,
            That is what all the commercials are saying as well.

            I am going to see another Neurogist in the coming months and I'm going to ask that Dr. the same question that was posted on here. I was told that I need never get the shingles vaccine because whatever it was that they checked in my blood to see if I'd ever had the chicken pox came back with numbers so high that my Dr. said it would be impossible for me to ever get the shingles.

            However I have not read or seen anything to back that up. In fact everything I've seen and heard says to me that I would be more likely to get shingles because the numbers being so high.

            Thank you for taking the time to respond.

            I am more than a little affraid that he just didn't want me to have to jump through the hoops again that I would need to do before restarting Gilenya. On the other hand I don't think he would tell me something he didn't believe was true.

            I am just confused about it and just want to do whatever is best for myself. I'm hoping that someone backs up what my Dr. has said but so far no such luck.

            Comment


              #7
              I think that what they checked on your blood test was "varicella titer. Varicella is the technical term for chicken pox, and the titer is a measure of immunity - the higher the titer the "more immune" you are to chicken pox, though once your level is "immune," it doesn't really make much difference how high it is AFAIK. At least that is what my neuro told me, and what the fine print in the Gilenya and chicken pox immunization package hand-outs say.

              I haven't actually gone on Gilenya yet because I have to see a cardiologist first, which is why I have read those fine-print hand-outs so carefully! They indicate that if you go off Gilenya for two weeks or longer you have to go back to the starting point again - pre-testing, 6 hour observation with first dose, all the rest. And given that you are already on Gilenya, that would mean 4 months off the drug - 3 months for "wash out" and then a month after the shingles vaccine until you start again.

              That is why I got the yellow fever vaccine. It is good for 10 years and my ten years are up in January 2013. Since I travel to the Amazon jungle and Sub-Saharan Africa for aid trips, I need that vaccine, but I don't want it messing up my Gilenya treatment.

              The medical specialties that can give you the most detailed and informed answer to your question would be Infectious Diseases or Immunology. Actually, I think any good general internist could look at your lab results and your health history and give you an informed opinion.

              I am not an internist, but I do a lot of humanitarian aid in the tropics, and one learns this stuff "on the fly" as it were.

              Comment


                #8
                Onlyairfare,
                Thank you for that answer.
                I will look into having someone else look at my results.
                I hope my neuro is right and I will never have to worry about getting the Shingles virus. It sounds very painful and I do not handle pain well at all. My MS. has only made my sensitivity to pain worse.

                I admit I never have read the small print in the Gilenya packet because I don't think I would have gone on it if I knew everything that has ever happened during the trial phase. I did sit at the cardioligists office for 6 hours the 1st day that I started Gilenya. My cheeks became very flushed almost immediately after taking the first dose, and for the first few months my cheeks would continue to get flushed for a few hours after taking my daily dose.

                I have been on it since Nov-2011 and now my face doesn't react to it anymore. My eye testing has been pushed to only once a year after my last visit. My blood gets checked every 6 months to make sure that my liver isn't being effected by the Gilenya. So far everything has come back good except last time my Glucose was high.

                Yesterday I went to another Dr. for an unrelated issue and my blood pressure was high. I'm a little worried because I don't know if it because of Gilenya or because Of what I ate and drank before my bloodwork was done last time and my blood pressure was checked yesterday. I'm not even sure if high blood pressure and high glucose have a connection at all.
                How wonderful that you are a humanitarian Aid!
                Thank you again for the very helpful information that you have shared with me. I really apreciate the time you took to reply to this post.
                Kirbylynn

                Comment


                  #9
                  Shingles

                  About your friend, I don't know why she would question her neuro. My neuro is my main contact and is open to questioning and reassures any doubts.

                  Originally posted by twisterred View Post
                  May I please ask two questions for a friend of mine?
                  She's 40-ish, has been on Gilenya for a year and doing well.


                  1. Can she get a Shingles booster vaccine when she turns 50?
                  My friend is concerned that she might be at risk of Shingles because of the medication.

                  2. Would she ever be at risk of Shingles even with an extremely high antibody count against the Chicken Pox?
                  Her Neuro had some blood drawn before she began Gilenya and it showed she did have an unusually high antibody number against Chicken Pox.
                  Because of that, her Neuro believes she is not at risk.

                  Any ideas??
                  Thank you for any thoughts and input!

                  Comment

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