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3rd Tysabri Infusion today, feeling weird

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    3rd Tysabri Infusion today, feeling weird

    Hi all,
    I had my 3rd tysabri infusion today. I came home from the infusion and worked on the computer for about 1-2 hours. When I got up, walking felt funny. My initial observation was that it seemed to take some effort more than normal to just propel my legs forward. (Not a ton of effort, but 'different'). I've pretty much been in bed for the evening. I just got up and walked around for a little bit, and my first thought was it feels like there is more gravity or a force pushing down on me when I am walking than I normally feel. Then it came to me that the description is probably what people talk about when they say their legs feel like lead or leaded down. I haven't really experienced this before--prior to tysabri or during infusion 1 or 2.

    Has anything like this happened with any of you when recently getting your infusion. I'm hoping the feeling is gone in the morning, but I just wanted to see if anyone had any similar experiences or input. I realize it could be totally independent of the tysabri. It could be a psuedo-exacerbation or more fearfully a real exacerbation. I will monitor it and call my NEURO in 24 hours if it is still happening. (On a side note, this week prior to getting the tysabri infusion, I have felt more tired and much less motivated to get non-essential things done). I figure that could be the tiredness people get the week before tysabir - or- it could be tiredness leading into a relapse??? I just was diagnosed with MS in March of this year (2015), so I'm still trying to get a handle on what's what that's happening with me.

    Thanks.
    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 Teekybird,
    How are things going with your legs today? Still have that lead feeling?

    I wrote lots of notes the days after my first few infusions. After the first one I had a terrible headache. Felt "weird" the following day and "off balance." Felt "fuzzy" and "lightheaded." These are a few of the words I had written down. That was over 6 years ago, so hard to remember just what went on. To a lesser extent, it happened - without the headache - the next few times. It was after 6 months that I really started to notice an effect on my symptoms. Things started reversing for me. Doctors started noticing the improvements. I am one of the lucky ones, Tysabri has been great for me.

    I would call your doctor's office if things continue, it may reassure you or if needed you can go get checked out. Tysabri is a very powerful drug, and it is messing with your brain, so it can cause lots of things to feel off. I hope it passes for you. I wish you a long healthy journey with your infusions.

    Comment


      #3
      feeling a bit better

      Hi LL60

      Overall I am feeling better today. Legs still feel a little off, but much better than last night. I read a posting that someone equated the 'leaden leg feeling' after tysabri with not drinking enough water before/during/after the infusion. I drank a lot of water last night and today, so don't know if that has helped in part. I see the neruro on August 6th, so I will tell about this experience. I also am supposed to get my jcv bloodwork done that day for the 3 mo. followup.

      Today I have a little bit of a sore throat. Again, who knows if it's related to the tysabri or not, but I think it is good to keep a record of experiences. Thank you very much for replying to my posting. I am glad that tysabri is working for you!
      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)

      Comment


        #4
        Glad you are feeling better. Enjoy your weekend.

        Comment


          #5
          Hey Teekybird,
          how are you feeling now ? Hope good !
          Linda

          Comment


            #6
            thanks for asking

            Hi Linda,
            Thanks for asking. I'm really not totally sure how I am doing. The leg feeling is not as heavy as on 7/16/15 (after tysabri infusion), but it is still there. My legs just feel "tired" overall and when I am walking a little heavy/not quite right. Today I'm having some weird sharp twinges of pain in my lower back and in my thigh. I'm really not quite sure what to think. Since I'm newly diagnosed I feel like I'm still getting a handle on my 'symptoms' and what's going on. I would say for the last 2 weeks I have felt more fatigued and just less motivated to get things done overall.

            Anyway, thanks for asking. I'm hanging in there and don't feel "bad" just not quite right.

            Hugs!
            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)

            Comment


              #7
              Strangely enough I've had this as well and I'm kind of baffled that I found someone on here experiencing the same thing... It started with me I think 3 or 4 months ago (I'm terrible at keeping notes of my symptoms lol), they would give me the Tysabri I'd go home and everything would be good until few hours later usually in the evening. I'll get this really bad tingling in my arms and legs but also the major lead feeling. It goes away slowly but surely few days later but it takes some time until I get my normal strength back and I'd be in bed pretty much the whole week after the Tysabri because of this.

              Pretty strange, hope your neurologist knows more because mine has no clue.

              Comment


                #8
                Hey DexterMorgan
                I see the Nurse Practitioner at the MS clinic on August 6, so I'll let you know if I hear anything. (My Neuro is out on maternity leave). Thank you so much for responding with your own experience related to this!!!!!!! It actually has me feeling better that someone else had this happen. (It's also interesting that you think it happened around the same time in treatment....and also that it did take "about" a week for me to get over the feeling.) Are you still taking Tysabri and if so how many infusions have you had? It sounds like you are still on it and still experiencing the lead-legs however long it has been....

                Today is the first day that I feel like my legs felt relatively normal. Overall ambition and motivation to do things was still low, but I'm hoping that the weird lead/heavy leg feeling has gone away.

                I'm also not doing a great job at keeping track of my symptoms...but I figure that what I write on here is a good way of checking back on them if I need to.
                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)

                Comment


                  #9
                  Hiya!

                  Great! I'll be seeing mine the 3th so I'll let you know too if they have any new news. It's weird right? Never thought I'd find someone on here that has these same symptoms! I've been getting Tysabri since November 2010, so almost 5 years...

                  The tingling and extreme lead feeling + extreme fatigue after the infusion has been something new since the past 3 months. The fatigue is the worse tbh, but they chalk it up to the MS not the medication. Which I don't believe because before this all happened I'd usually be tired for 1 day after the infusion and after that the Tysabri would give me lots of energy. Now for some reason it's the complete opposite!

                  I really hope this is a 1 time thing for you and it's just your body adjusting to the medication!

                  Comment


                    #10
                    DexterMorgan,

                    I did hear back from one of the nurses at the infusion center. She said that the leg feeling is something that is less common, but that has been reported. She said it was something that should be documented in my chart. That's the only news I have so far. I woke up today with "tired" feeling legs, but am not noticing the heavy feeling when walking.
                    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)

                    Comment


                      #11
                      Okay, y'all are making me nervous. I can't do heavy legs... I know it's not realistic to think I'm going to go on a medication and not experience some side effects. It's just my goal is to stay working which I am able to do so far. Heavy legs would interfere with my ability to do my job. So...

                      Dexter, not that I know anything about this to make suggestions but do you think since its been 5 years you may have developed antibodies to Tysabri?

                      Comment


                        #12
                        Originally posted by shel67 View Post
                        Okay, y'all are making me nervous. I can't do heavy legs... I know it's not realistic to think I'm going to go on a medication and not experience some side effects. It's just my goal is to stay working which I am able to do so far. Heavy legs would interfere with my ability to do my job. So...

                        Dexter, not that I know anything about this to make suggestions but do you think since its been 5 years you may have developed antibodies to Tysabri?
                        Aww don't be nervous! It's not a common symptom of Tysabri at all, so don't worry! This is literally the first time that I'm hearing that someone else has this same symptom.

                        I'm actually thinking the same thing, but I wouldn't know what to look for as far as symptoms when you're developing antibodies? I have been noticing however that the Tysabri doesn't have the same effect on me as it used to. It doesn't give me energy anymore and the weakness in arms has definitely gone worse in combination with loads of inflammations in my body. I hope not though, I'd be shattered if that were the case. But I'm def going to ask them to investigate this! Thanks for the reminder!

                        Comment


                          #13
                          don't be scared!

                          Shell67,

                          No, I don't mean to scare you!!!!

                          I think this is a rare side-effect--based on the nurse's response and also that DexterMorgan has had it but never encountered anyone else with it.

                          Also, this was not a "bad" side effect. It would not have kept me from working (but I am off for the summer as a teacher). It's more in the "weird, what's going on with my body now?" type category. My legs didn't feel unable to move or like totally weighed down by a ton of bricks. Just sort of "heavy" like more gravity was pushing down on them or something.

                          Dex: I think you can request to be tested for antibodies to Tysabri.
                          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)

                          Comment


                            #14
                            It's not y'all. It's me. I know it's not realistic to think I'll have no side effects.

                            Comment


                              #15
                              I'm so sick of the hospital I'm getting treated at. I told them about the lead feeling, the terrible headaches and huge inflammation in my shoulder and the assistant was literally like "you'll just have to deal with it". She asked if I could change the interval to 6 weeks because she felt the dose might be too much for my body but for some odd reason my neurologist won't let me because with a 6 week interval the Tysabri isn't as effective.

                              When I asked about the antibodies, they told me it would be stupid to test it because they feel I don't have enough symptoms. Even when I asked that I would like it to be tested just to be sure they were like "we'll only test when we see huge MS relapses , we've tested the strength in your legs and arms and it's still the same so there is no point". Ehm so I've got to wait till it gets really bad to the point where it's literally too late and than they will test for antibodies? I'm shocked really, because the weakness definitely has gotten worse, I can't write anymore and standing is getting difficult but this isn't something you see when you're pushing for 5 seconds against my hand in these "tests".

                              Anyways to keep it short, I have to deal with these side effects I hope your doc has better news. Let's see if I get it again this month.

                              Comment

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