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Anxiety as a side effect of Tysabri?

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    Anxiety as a side effect of Tysabri?

    I've had two Tysabri treatments, and feel like I'm about to jump out of my skin! I wake up at night with my heart racing and pounding, and during the day my heart feels like it's pounding, although my heartrate is normal. I feel "shaky inside", as though I have a constant very fine tremor. And, a constant dull headache, sort of like sinus pressure but not exactly. Has anybody else experienced these? It almost has to be the Tysabri - nothing else has changed.
    Carol
    RRMS
    Sx for more than 10 years
    Dx November 2006

    #2
    I'm not Your Dr but,

    I just asked this to my support group last week. I've been on Ty for going on 10 months (2-11). Rita from my Group chirped in w/ "that's an MS hug." I looked that up on here and was satisfied w/ that answer. MS is a muscular "thing". I am a LMT (licensed massage therapist) and know that we have muscles in between our ribs. Intercostal muscles. 2 layers actually. 1 for inspiration the other for exsperation. These muscles may be going into spasm like any one of our other muscles.
    Again, let your Dr know og you concern, becuz he had much more schooling than I did


    jersey-in-pa

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      #3
      oops,

      expiration (in & out)

      jersey-in-pa

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        #4
        I've had the "MS Hug" before, and this isn't it . This definitely feels like a drug effect - sort of like the anxiety you get from steroids. I have a call in to my doc - will post his take on it when he calls back. Thanks!
        Carol
        RRMS
        Sx for more than 10 years
        Dx November 2006

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          #5
          boogiesmom -
          All we can do is share what we have gone though. Always best to call the doctor if you have a concern. And a racing heart would be a be concern.

          I have never had any of those symptoms, except for the headache. Tysabri lowers both my pluse and blood pressure. They are low anyway, but after an infusion, my heart rate may go to 44 or 45. 54 is normal for me.

          The headches is something I do have to deal with. Do you get pre meds? I get Tylenol and Benadryl. I got pretty bad, but short lived headaches the first few times. Then went from about #5 - #19 without any problems with headaches. The last couple I have had more of a problem with headaches. Also have had a cold, so it could be from that.

          Do let us know what your MD things.

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            #6
            Originally posted by boogiesmom View Post
            I've had two Tysabri treatments, and feel like I'm about to jump out of my skin! I wake up at night with my heart racing and pounding, and during the day my heart feels like it's pounding, although my heartrate is normal. I feel "shaky inside", as though I have a constant very fine tremor. And, a constant dull headache, sort of like sinus pressure but not exactly. Has anybody else experienced these? It almost has to be the Tysabri - nothing else has changed.
            Is it worse after your infusion and/or does it lessen as time goes by?
            dx Transverse Myelitis March/2008 - dx upgraded to RRMS June/2008
            Rebif June/2008
            Tysabri October/2010

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              #7
              sherp

              I do not use Tysabri, but I get the same heart racing feelings even though it is not racing Dr. says it is MS. I have it all the time and itris annoying to say the least.

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                #8
                I experience this as part of my MS and have for a long while. I have been on Tysabri for 3 years now.

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                  #9
                  I had my second infusion yesterday. I feel dizzy, maybe not dizzy, but off balance, jello legs/body, hard to hold my head up, and I have this internal shaking....like when your nervous or about to vomit; maybe heart beating fast, in my throat feeling. It is a really weird feeling. I still feel the same today.

                  I was so glad to read that I am not the only one with this feeling. I called the neuro today, and told it is anxiety.....as a side effect of the Tysabri. I was given a prescription of Klonopin. I just took it 30 minutes ago, so I don't know if it will help.
                  DX: RRMS Jan 2010 -- LDN: Mar 2010-Dec 2010, Tysabri: Feb 2011 reaction, Gilenya: Aug 2011 reaction, Copaxone: Oct 2011 reaction, Tecfidera: May 2013 reaction

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                    #10
                    Take heart from someone in the same boat

                    So you have MS - anxiety! Its severe enough to have to take tysabri rather than inteferon or c - anxiety. MS lesions affect your brain chemistry altering the serotonin/cortisol balance- result ANXIETY. This drug that theyve given to fix this carries many health risks - ANXIETY! No one can tell you if you will be ok long term or even if the drug will definitely help. No wonder you feel that way - Im starting Ty in the next couple of weeks and I feel the same already!
                    Love and Hugs - I am totally in your shoes babe

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                      #11
                      Originally posted by MrsChip View Post
                      So you have MS - anxiety! Its severe enough to have to take tysabri rather than inteferon or c - anxiety. MS lesions affect your brain chemistry altering the serotonin/cortisol balance- result ANXIETY. This drug that theyve given to fix this carries many health risks - ANXIETY! No one can tell you if you will be ok long term or even if the drug will definitely help. No wonder you feel that way - Im starting Ty in the next couple of weeks and I feel the same already!
                      Love and Hugs - I am totally in your shoes babe
                      Are you saying that the anxiety is from MS and not from the Tysabri?
                      That is not my case....I never had this internal tremor/shaking until after my Tysabri infusion.
                      What health risks...does Klonopin have? I hate that they give a drug to treat the side effect of a different drug. Seems crazy!!
                      DX: RRMS Jan 2010 -- LDN: Mar 2010-Dec 2010, Tysabri: Feb 2011 reaction, Gilenya: Aug 2011 reaction, Copaxone: Oct 2011 reaction, Tecfidera: May 2013 reaction

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                        #12
                        I believe you when you say that you had no anxiety before tysabri. All that I can suggest is that you tell your neuro or ms nurse before your next infusion. Apologies as i wasnt meaning to dismiss your feelings but saying that im scared witless and all over the place worrying about my first Ty infusion. Probably just projecting my own anxiety onto your case. Please ask you're neuro or MS nurse about this before your next infusion to put you're mind at rest.

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