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    #1

    Fatigue and feeling down

    I have had a terrible time tolerating many of the MS medications.

    You can see that in my signature line.

    Tysabri is easy enough to take but I am so fatigued and I feel like I have no feelings except for

    wanting to cry about sad things.

    I swim 3 times a week and I generally love it and feel almost like a kid again!

    But since starting Tysabri again that joy is gone. I feel blah.

    I ache and hurt all over now and my joints hurt too.

    I do have osteoarthritis but this is different.

    My lower back hurts. I am just miserable.

    My doctor will not let me go without an DMD.

    I know I need one because when I am on nothing I start getting horrible pain and pressure behind my eyes.

    Along with a few other things.

    The pain is gone since starting TY again.

    TY causes far fewer side effects for me than the other did.

    I just wish I didn't have any of these annoying side effects.

    Does anyone else have any of these issues?

    I can not drive anymore. I can not get to either of my daughter's homes to help them.

    My 31 year old daughter has 4 month old twin girls I would LOVE to go help with, but I can't.

    My husband takes me where I need to go after he gets off of work.

    But then our 4 children get home and they need to be taken care of.

    We adopted 4 children with disabilities before I was diagnosed.

    So going to help our girls in the afternoon and evening is out.

    I just had to share all of this.

    But now I need to get to bed.
    LA dx MS feb 2008
    Avonex Feb 2008-May 2009, Betaseron July 2009-Oct 2011 -- Tysabri Nov 2012-2014 -- Tecfidera 2014-2015 (allergic reaction) --Copaxone 2015-2016 (could not tolerate the painful itching) -- Tysabri November 2016 - Trying CBD for pain control
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    #2
    Hi,
    Sorry about your 'blah' and hope talking about it helped.

    I do feel very achy/flu-y/tired for about 48hrs after they start the TY. I take pills and sleep mostly. Some others i have spoken to actually feel improved so we are all different. I'm JC+, but low.

    I was wondering if you had ever tried taking evening primrose oil? I have been taking it since April 16 and it has made a huge difference for me with arthritis and bursitis after years of taking prescribed meds that were very little help.

    Your welcome to 'share' anytime. Hope this helps.

    Comment

      #3
      Hi,
      I am glad there is someone else who does not feel great while taking Tysabri.
      I wish I did though! The one positive is it does help with my eye pain a lot.

      I am not JC+ thankfully. I have not tried evening primrose but I will check into it. The weather we have been having in the lower Great Lakes area has been crazy! It is making arthritis and sinus issues much more difficult for a lot of people.

      I am happy you responded! It helps to know I am not the only one.


      Originally posted by Carolinemf View Post
      Hi,
      Sorry about your 'blah' and hope talking about it helped.

      I do feel very achy/flu-y/tired for about 48hrs after they start the TY. I take pills and sleep mostly. Some others i have spoken to actually feel improved so we are all different. I'm JC+, but low.

      I was wondering if you had ever tried taking evening primrose oil? I have been taking it since April 16 and it has made a huge difference for me with arthritis and bursitis after years of taking prescribed meds that were very little help.

      Your welcome to 'share' anytime. Hope this helps.
      LA dx MS feb 2008
      Avonex Feb 2008-May 2009, Betaseron July 2009-Oct 2011 -- Tysabri Nov 2012-2014 -- Tecfidera 2014-2015 (allergic reaction) --Copaxone 2015-2016 (could not tolerate the painful itching) -- Tysabri November 2016 - Trying CBD for pain control

      Comment

        #4
        Tysabri

        Hi -- I was on Tysabri - on a trial - a number of years ago. I also did not feel great on it. I ended up quitting it, because of side effects. I am now taking Gilenya, and find it much better for me.

        Comment

          #5
          I notice you've only had at the most 5 infusions. Did you realize it takes at least 6 months for your body to reach "saturation" level in your blood? Until this point, your body is adjusting to the level of the drug, and improvement probably hasn't begun. If you can stick it out, I'd give it a few more months to see if you don't improve. That being said, Ty isn't for everyone. If you are still having intolerable symptoms, perhaps look at one of the other infusible drugs. They seem to have the best efficacy for MS. Ty has been good for me.

          By the way, have you tried tart cherry juice concentrate, 1T twice a day in 8oz of water for your osteoarthritis? It has really helped me and it's good too! You can get it on Amazon. I believe it has also helped with the inflammation of MS.

          Comment

            #6
            I had been on TY previously for 2 years. I had to go off of it at that time because our insurance would not cover the blood test for the JCV.

            I am going to give it more time and see what happens.

            I didn't know that about cherry juice. I will check that out too. Thank you!
            LA dx MS feb 2008
            Avonex Feb 2008-May 2009, Betaseron July 2009-Oct 2011 -- Tysabri Nov 2012-2014 -- Tecfidera 2014-2015 (allergic reaction) --Copaxone 2015-2016 (could not tolerate the painful itching) -- Tysabri November 2016 - Trying CBD for pain control

            Comment

              #7
              I am going to let my neurologist know about feeling down though. This is not much fun.
              LA dx MS feb 2008
              Avonex Feb 2008-May 2009, Betaseron July 2009-Oct 2011 -- Tysabri Nov 2012-2014 -- Tecfidera 2014-2015 (allergic reaction) --Copaxone 2015-2016 (could not tolerate the painful itching) -- Tysabri November 2016 - Trying CBD for pain control

              Comment

                #8
                I have been on Ty for over 5 years now and it no longer gives me a boost. I need to sleep the day of the infusion and sometimes the day after. Looking back and now I am depressed a lot and I am on two anti-depressants. However, I have had the least other side effects as well.
                Disabled RN with MS for 14 years
                SPMS EDSS 7.5 Wheelchair (but a racing one)
                Tysabri

                Comment

                  #9
                  sickjebw,

                  Sorry for that misread on Tysabri. I missed the previous use. You probably already know, but just in case, Quest diagnostics will do your JC virus test at no charge. You do need a script. You can google cherry juice and osteoarthritis to find the studies. I purchase the Cherry Bay Orchards brand. I take my pills with it. Good luck!

                  Comment

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