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3rd Tysabri Infusion today, feeling weird

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    #16
    had 3 month follow up check up for Tysabri and MS today!

    Hey Dexter!

    Awwwh, I'm sorry to hear about your frustrations. I saw the MS Nurse Practitioner today, so will share my information. Before I go on, I just want to say, "People who are considering Tysabri, please, I do not want this to seem negative or a reason for you not to take Tysabri."

    Here is my understanding of my chat today.

    We talked about the heavy leg sensation. In my case, since it was the "most severe" the night after Tysabri, and then was less the next day and went away totally in a week, she was not really concerned that it was a progression of the disease or a relapse. So, she said it was likely a side effect of the Tysabri and that as I continue to receive the infusions, we will monitor this. (Ugh, I'm hoping it was a fluke, and the 4th infusion is unremarkable).

    So, I asked if the fact that I was having a "side effect" like this was any indicator that the tysabri was not working or was ineffective for me. Again, she said that there is no reason to believe this, but basically that different medications effect different people in different ways.

    So, then I asked about the tysabri antibody test. She said that they (I'm assuming "they" is the practice) only does the tysabri antibody test very rarely. Basically, it is done if there is a real indication that tysabri is not effective for an individual. (So, I think this kind of corresponds to what you were told, DexterMorgan). It sounds like if you are having definite relapses/evidence of disease progression, they would be more likely to 'consider' doing this test. (I'm not sure why there is 'such' reluctance on this test; maybe it is expensive; I really don't know).

    My 4th infusion will be on Friday, August 14.
    (DexterMorgan, when is your next one?)

    Today, I got blood work done to check for the JC virus, liver functions, and blood count. (It's my first 3 month blood check). Results pending.
    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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      #17
      I just had #5 infusion. They take blood before each infusion. Always interesting to read how others are being affected by TY.

      Hoping for the best and keeping a positive outlook---
      toot

      DX 1986 currently on TY
      Copaxone 2003 to February 2015

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        #18
        Infusion #4 is tomorrow for me (8/14/15)

        Hoping for no reactions/side effects and a very unremarkable experience. Will let you all know.
        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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          #19
          Originally posted by Teekybird View Post
          Hoping for no reactions/side effects and a very unremarkable experience. Will let you all know.
          I hope your infusion goes wonderful and is excellent for you
          Linda

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            #20
            infusion #4 was okay -- no noticeable side effects

            Hi all,

            Well, I did not have the "heavy leg" feeling this time after infusion #4. The nurse did give me Benadryl (50mg) and tylenol before the infusion this time. I don't know if that helped any.

            I had a really busy weekend after the infusion, and did okay. (I attended a GREAT MS seminar/conference here in Columbus, Ohio). It was put on by CAN DO MS.
            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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              #21
              Doing great with 6 week intervals between infusions

              Hi Dexter - I, too, was feeling four week intervals was too much for my body. My infusions lay me out for 2 days with spaciness and leaden limbs. We plan our life around my infusions. I requested 6 week intervals and have been on this regimen for 2 years. There has still been absolutely no change in my MRI scans. Before starting TY about 4 years ago, there was always progression. (my neurologist insists on a scan every 4 months since my titre level of JC virus is high... It's mainly for his reassurance - but it serves as a great monitor of any possible progression) He is a very respected neurologist - people come to see him from other states. When I requested the new interval, he informed me there have not been any studies showing that infusions have to be spaced 4 weeks apart. Or, conversely, there have not been any studies with patients that have longer intervals. He also has patients that go 8 weeks.

              Since I have extended the time between infusions to 6 weeks, I feel better, overall, between infusions. I have always been sensitive to medications and usually require a lesser dose of whatever I take. When I was on the 4 week schedule, I felt I never really 'recovered' from the infusion until week 3 and only had 1 really good week. I now only have 2 bad days and am much happier.

              Originally posted by DexterMorgan View Post
              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.

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                #22
                JC virus negative after 3 infusions

                Since I started this thread I think this is where I will post updates. I got my 3 months of being on Tysabri blood work check for JC Virus. It came back negative. I didn't get any number though. Next time they order it, I am going to ask them to code it so that the negative number is given, and I hope that will work.

                I did not have major side effects after infusion #4. Didn't have the heavy leg issue. I am back to work--as a teacher, and I do have to say that every day when I wake up my feet and legs feel exhausted. But this is a symptom that I experienced last year (before Tysabri and before knowing I had MS). I wake up feeling as if I had walked 10 miles the day before. I am on my feel a lot as a teacher, but I feel like my feet and legs are way more exhausted/tired feeling than really warranted.

                Usually my legs feel better once I get moving and get about my day, but my feet stay tired feeling.
                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


                  #23
                  Originally posted by dawnincolorado View Post
                  Hi Dexter - I, too, was feeling four week intervals was too much for my body. My infusions lay me out for 2 days with spaciness and leaden limbs. We plan our life around my infusions. I requested 6 week intervals and have been on this regimen for 2 years. There has still been absolutely no change in my MRI scans. Before starting TY about 4 years ago, there was always progression. (my neurologist insists on a scan every 4 months since my titre level of JC virus is high... It's mainly for his reassurance - but it serves as a great monitor of any possible progression) He is a very respected neurologist - people come to see him from other states. When I requested the new interval, he informed me there have not been any studies showing that infusions have to be spaced 4 weeks apart. Or, conversely, there have not been any studies with patients that have longer intervals. He also has patients that go 8 weeks.

                  Since I have extended the time between infusions to 6 weeks, I feel better, overall, between infusions. I have always been sensitive to medications and usually require a lesser dose of whatever I take. When I was on the 4 week schedule, I felt I never really 'recovered' from the infusion until week 3 and only had 1 really good week. I now only have 2 bad days and am much happier.
                  Thanks for letting me know! Really appreciate it. It's annoying that I can't say what I want for my body and that annoys me. I can't even try the 6 week interval, because they only believe in the 4 week interval.

                  @Teekybird: there is a number when you're negative? I thought that was only the case when you're positive? Going to ask this for sure too now! Maybe your body is adjusting to the medication and reacting to it that way, I hope it will get better for you!

                  Update about me too: haven't gotten the heavy leg thing either, however yesterday I had this rash on my arm on the side where they put the catheter for the infusion... They were like all really small bumps on my arm. It's completely gone now luckily, but it seems like some kind of reaction to the med. I'm glad it's gone because I have this weird phobia for bumps lol, my hairs were standing up when I saw the bumps on my arm haha.

                  Comment


                    #24
                    HI Dexter:

                    I think you are in Belgium, so I am not sure how the icv testing/processing might be different. I am cutting/pasting information that Ru4cats posted to me. It sounds like getting the number of your value considered negative requires that the laboratory codes the test a special way--at least here in the U.S. Message posted by Ru4cats from another post to me follows:

                    Teekybird,

                    I spent two years working with Quest diagnostics to get my titer number. I finally succeeded this past April. Your number is available, and I found out that the results DO include the titer number; it all revolves around the coding number for the test, and for Quest it is 91665. 90257- No titer number. 91665- titer number. There is no price difference on the test.
                    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


                      #25
                      JC virus test?

                      Originally posted by Teekybird View Post
                      Since I started this thread I think this is where I will post updates. I got my 3 months of being on Tysabri blood work check for JC Virus. It came back negative. I didn't get any number though. Next time they order it, I am going to ask them to code it so that the negative number is given, and I hope that will work.

                      I did not have major side effects after infusion #4. Didn't have the heavy leg issue. I am back to work--as a teacher, and I do have to say that every day when I wake up my feet and legs feel exhausted. But this is a symptom that I experienced last year (before Tysabri and before knowing I had MS). I wake up feeling as if I had walked 10 miles the day before. I am on my feel a lot as a teacher, but I feel like my feet and legs are way more exhausted/tired feeling than really warranted.

                      Usually my legs feel better once I get moving and get about my day, but my feet stay tired feeling.
                      HI, I just had my 3rd. infusion but no mention was ever made of getting a JC virus test at the third infusion. Is this a tysabri rule or just what some doctors do? The details of my 3rd infusion are on my new post, New Maybe
                      It did not go well and I also see people talking about stretching out their infusions on your post because I am real close to giving up on Ty. Glad yours went well though.
                      PEACE
                      Tortis

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                        #26
                        Bumps at infusion site

                        I had this rash on my arm on the side where they put the catheter for the infusion... They were like all really small bumps on my arm. It's completely gone now luckily, but it seems like some kind of reaction to the med. I'm glad it's gone because I have this weird phobia for bumps lol, my hairs were standing up when I saw the bumps on my arm haha.
                        It may not be the tysabri causing the bumps. It could be that your skin has become sensitive to the antiseptic they use to clean the area before they start the IV. Or it could be a reaction to the tape used after the infusion. I am allergic to the adhesive on any kind tape, so after the IV is out, my infusion site is wrapped with Coban for a while. It works the same as a bandaid, but doesn't cause me to have any skin reaction (knock on wood).
                        Echo
                        DX 2007 Started Ocrevus on 2/14/2018

                        "Some where over the rainbow...."

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                          #27
                          Originally posted by Echo2099 View Post
                          It may not be the tysabri causing the bumps. It could be that your skin has become sensitive to the antiseptic they use to clean the area before they start the IV. Or it could be a reaction to the tape used after the infusion. I am allergic to the adhesive on any kind tape, so after the IV is out, my infusion site is wrapped with Coban for a while. It works the same as a bandaid, but doesn't cause me to have any skin reaction (knock on wood).
                          Thanks for replying! I showed my doctor the picture and he was positive that it wasn't of the Tysabri either. I didn't really think about a reaction to the antiseptic... but my whole underarm was covered in these little pimples it was disgusting, gave me major goosebumps! I think that if it was a reaction to the antiseptic or the bandage then it would have been only local and not my whole underarm, no? I had the Tysabri last week again and noticed only a few little raising bumps this time but definitely not as major as last time! We'll see I guess, I'll just have to monitor it!

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                            #28
                            Next time you go for an infusion, ask the nurse about it. He/she may have more insight for you.
                            Echo
                            DX 2007 Started Ocrevus on 2/14/2018

                            "Some where over the rainbow...."

                            Comment


                              #29
                              Originally posted by Echo2099 View Post
                              Next time you go for an infusion, ask the nurse about it. He/she may have more insight for you.
                              Ha, that's actually what the assistant neuro recommended me when I showed him the picture so I went and asked a nurse. She said 'ehm that's something you should ask your doctor...' She was a bit mad because she felt it should be the task of the doctor to say what the rash was, not hers. She said it might be urticaria and she was a bit shocked (again) that the doc didn't recognize it. I don't think it was urticaria though because I had no itching...

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                                #30
                                Update

                                It would have been 5 years on Tysabri in November but unfortunately I got the call today that I have to stop right away. My JC virus has turned positive and my titer has gone from 0,... to 2,... in 1 month time. I'm honestly heartbroken from it, can't stop crying as I'm in my last year of uni and now I have to deal with a possible new medication and the new side effects of that.

                                I'm mad that they also LIED to me about the JC stuff, they took a blood sample 2 months ago and for some reason they took one again last week. I asked the doc why and she told me it was because of the last sample, something happened to it or something. But the doctor that called me today told me they knew I was positive since last month! So the sample they took last week was probably a monthly check up to see if the titer had raised. When I asked her why she didn't tell me, she told me that it was the best for the patient so that they don't worry about it as it doesn't mean you have to stop right away? WHAT ON EARTH?! I can't even know and DECIDE for myself if a JC positive result means I want to stop? THEY have to decide that for me? I'm done with this hospital, absolutely done!

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