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    2 year update

    So, I've been on Tysabri for 24 infusions now. I've experienced no side effects that I know of. I can't see where I feel any bump when I get the infusion or any lags when I'm due. I feel the same. Doctor says MRIs are stable and I'm not progressing.

    Now with all that said I've gone through so many ups and downs since the first infusion in September '15. I still feel in my case my trigger is hormones. The last two months or so I've actually felt consistent in feeling one way. I've also for what ever reason actually feel better MS speaking. Symptoms are still there but there's been subtle improvement just in the last month or so.

    Question: has anyone ever reported symptom improvement after 2 years of treatment? I thought after 6 months if takes full effect. I know MS is mysterious and it basically does what it wants.

    I'm just thankful my crazy, feeling better one day feeling like I'm in a relapse (when I'm not) the next has stopped (at least for now). The changes made are that I'm taking more Vitamin D than I was and I believe began actual menopause vrs Peri menopause. I started to take a low does birth control pill that has the same level of hormones daily and I don't interrupt them for a week. I keep taking them.

    I share this info in case it can help someone else. My " improvement" isn't earth shattering or anything but I do feel more " normal" in how I feel/move. My head feels more "settled" and I just am moving more intuitively and coordinated. And when I'm relaxed Is feeling more normal with that. My symptoms are mostly sensory and all in my brain. They're very very hard to describe. I do have some mild motor symptoms of weakness and control and that has improved to some degree.

    I realized this is maybe actual improvement when I went to clean up a spill on the floor with a towel and without thinking I bent down, at the knees, not over, and wiped it up like I use to be able to. The last 2 years with the dizziness/balance you do things differently than what you did before. It's as if I'm doing without thinking about how I need to adjust to it, if that makes sense.

    I still work full time (doing hair) 12 hr days, 4 days a week and have not missed a day, slowed down nor has the quality of my work changed. I alone notice differences and I do struggle but it doesn't effect my ability. The most important thing I realized is MS doesn't make you move faster or better over time but the opposite. I can honestly say speed has improved so I'm thinking that's huge. Now watch I regress since opening my big mouth...

    So, again is it steady level of hormones? Is it an increase in Vitimin D? Who knows. I haven't talked to Doc to get his opinion yet but will soon.

    I hope everyone else is well. I check in now and then to read posts and be updated.

    I was also wondering if anyone here has switched or thought about switching to the new Ocrevus? My Doc said I could switch if I want but it won't necessarily mean it'll work better than Tysabri. I was also wondering about Lemtrada. What would be the benefits of switching to that? I guess if something isn't broken, I shouldn't fix it. Tysabri seems to be working well. I should consider myself lucky. Thanks for "listening".

    #2
    Hi shel67

    Glad to hear that you are doing better, all things considered.

    I'm not taking any DMT's, so nothing to share with you about that.

    But I did want to share that since I increased my Vitamin D dosage a few years ago, I feel much better overall.

    It's probably a combination of things that are helping you, and that is wonderful.

    Hope it continues for you!

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      I am glad to hear your "good news" I have been on Ty for 11 years and count my blessings!

      I hope you keep doing better n better or, at least, hold where you are now
      Linda

      Comment


        #4
        shel67

        Your story could be mine! However, I'm on my 7th year since diagnosis and have over 90 infusions under my belt.

        My neurologist mentioned several years ago that improvement under Tysabri continues for at least three years. I have one new symptom that had just begun when I started Tysabri, and it continues to improve even to this day. However, part of this is due to exercise and refusing to give in, I'm sure. My symptoms that lead me to my MS diagnosis finally stabilized within the past couple years, so I no longer feel like I'm on a one-way elevator ride, D-O-W-N. Maybe I've finally reached the ground floor, but I know, most likely, I won't be going back up.

        I went through menopause 15 years ago, and it was the most miserable time of my life! I hadn't been diagnosed, yet, and can't imagine having MS AND menopause. The best thing I ever did was go on Prempro for 10 years. I finally quit cold turkey three years ago, and the hot flashes (yes, they were still there) are finally down to a warm glow a couple times a night.

        As far as switching to another drug, as my neurologist says, "If it ain't broke, don't fix it." I don't know if you're aware, but Tysabri not only targets the T cells, but also does a better job of attacking the B cells, the same ones Ocrevus attacks. You're getting two for the price of one!

        I wouldn't even consider Lemtrada; my neurologist said it was a drug of last resort since it has several lifelong medical issues that can be deadly. In my mind's eye, I still see her shaking her head when I mentioned Lemtrada.

        I have moved my infusions to every six weeks since I'm older and stable, and it's nice getting away from the "every 28 day" routine. I haven't noticed any difference. I do keep tabs on my Vitamin D level and JC status. Along with Tysabri, blood every three months, and an MRI once a year, I'm good!

        Best of luck.

        Comment


          #5
          Originally posted by ru4cats View Post
          shel67

          Your story could be mine! However, I'm on my 7th year since diagnosis and have over 90 infusions under my belt.

          My neurologist mentioned several years ago that improvement under Tysabri continues for at least three years. I have one new symptom that had just begun when I started Tysabri, and it continues to improve even to this day. However, part of this is due to exercise and refusing to give in, I'm sure. My symptoms that lead me to my MS diagnosis finally stabilized within the past couple years, so I no longer feel like I'm on a one-way elevator ride, D-O-W-N. Maybe I've finally reached the ground floor, but I know, most likely, I won't be going back up.

          I went through menopause 15 years ago, and it was the most miserable time of my life! I hadn't been diagnosed, yet, and can't imagine having MS AND menopause. The best thing I ever did was go on Prempro for 10 years. I finally quit cold turkey three years ago, and the hot flashes (yes, they were still there) are finally down to a warm glow a couple times a night.

          As far as switching to another drug, as my neurologist says, "If it ain't broke, don't fix it." I don't know if you're aware, but Tysabri not only targets the T cells, but also does a better job of attacking the B cells, the same ones Ocrevus attacks. You're getting two for the price of one!

          I wouldn't even consider Lemtrada; my neurologist said it was a drug of last resort since it has several lifelong medical issues that can be deadly. In my mind's eye, I still see her shaking her head when I mentioned Lemtrada.

          I have moved my infusions to every six weeks since I'm older and stable, and it's nice getting away from the "every 28 day" routine. I haven't noticed any difference. I do keep tabs on my Vitamin D level and JC status. Along with Tysabri, blood every three months, and an MRI once a year, I'm good!

          Best of luck.
          Thanks for the replies. I've had a few bad days but even so I do feel as if there's been improvement.

          I had an appointment with the Nuro and he basically said my brain will never go back to being normal again but I haven't progressed and I may have improved a little.

          Im going to stick with TY as long as I can. The Nuro said the new DMT won't necessarily work better than TY, it'll just be more convenient.

          Thanks again for the replies. Happy Thanksgiving to everyone

          Comment

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