Bean’s Blog ~ Tysabri – My MS Therapy

by Caroline Kyriakou

I switched my MS therapy to Tysabri in 2008.  I had been on Avonex for a year and a half and finally had found somewhat of a routine with the weekly shots.  I became more comfortable after finding out about a prescription numbing cream and slowly had less and less side effects. After getting MRI results, my neurologist informed me that Avonex was no longer working for me.

I had a couple options, the ones I was considering were Copaxone, a daily injection or Tysabri, a monthly infusion. I was fairly certain that I would go with Tysabri, just because I found out after being diagnosed with MS that I had a needle phobia. I really couldn’t see myself getting a shot every day. Also, at this point Abe, my husband, had to give me my shots and I didn’t want to have to depend on him or anyone else for them. I knew I wouldn’t be able to give myself the injections either.

I was a little nervous about starting on Tysabri.  It had been taken off the market at one point as a handful of people had developed PML, a rare brain infection that can leave you in vegetative state or be fatal.  My neurologist informed me that I would be closely monitored. I felt comfortable with the decision to start Tysabri and scheduled my first infusion.

I have now been on Tysabri for over 4 years. I am so thankful I made this choice.  Within the last few years there has been a blood test that can detect if you have been exposed to the JC Virus, which puts you at risk for PML.  The last two years I have tested negative. For me, Tysabri has worked so well. Not only is my quality of life been better because I no longer have to worry about shots (as soon as the shot was over, I started having anxiety about the next shot) but I haven’t had a relapse since my first infusion!

About the author: Caroline was diagnosed with MS in 2006. She is currently inspiring those with MS through blogging, her volunteer efforts as a mentor at MS Active Source, her Facebook group; Friends Against the MonSter and also you can ‘like’ Caroline’s page on Facebook right here

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

8 Comments:

  1. I have heard so many good things about Tysabri and it does seem like a relief to be done with the shots for a whole month! Thank you for some more helpful, excellent information!

    • Yvonne,
      I’m the same as you! I have quite a few friends using Tysabri! I tried it when it was back on the market after those few people died. My Neuro told me at that time it looked to him like their death was due to using Tysabri in combination to other immunosuppressive medications. I was feeling so poorly at the time it was worth the risk to me. The Tysabri worked wonderfully for me for a month! I was walking! Unfortunately for me in just 2 months my body had build up a resistance! oh well, it is what it is! I am happy for Bean’s success with it!
      ~Linda

    • Glad you like the blog and learned something from it! 🙂

  2. Hi Caroline. Despite your needle phobia you went for Tysabri. That’s really is a great example .for any sufferer. I am happy to see that you are recovering.

  3. My wife lead my to this site and this is her ID. She is my primary caregiver and blessing in life. I was diagnosed with Marburg Variant MS in early 2009 just 60 days after the first neural signs. After struggling through the medical system and hospitalization, I was very fortunate to get to the top of a University Health Care System Nuerology Department and one of the world’s authorities of MS. There is much protocol in this ugly and tragic disease be it RRMS or the most tragic progressions. It appears you have good council and results going. Thank all you know for that. I am on tysabri and have been from the get go even though early doctors preached ABC drugs from protocol which would or could have been tragic for me. It took aggressive medications, steroids and tysabrI early on for me. I have a much less regiment now. I have a very high odds very PML I including the JC virus being positiv but it is worth it to me. I still have issues and pain but walk and talk most days. I expect it will worsen someday and there are very good and very bad days right now. Life is good though. 51 years old and not a Senior Executive anymore and limited for many things. A God given gift for everyday. A caregiver that took over early and demanded answers and care. Make sure you get answers and care. Have a caregiver partner.

    • Franny’s husband~
      I look forward to knowing your name~ 🙂 Wow! Franny have quite the story! Yes, living with MS is definitely an adventure!!! Have you ever thought of being a guest author for MSrelief? We’re looking for someone to write about the MS experience from the eyes of the Caregiver. I know the information from the eyes of the person with MS but I don’t know really how to help the caregiver! What do you think? You can answer by going to top of the home page and you’ll see ‘contact us’ or just type this in your URL: http://69.89.31.237/~msrelie1/wordpress/contact-us/
      Let me know if you’re interested~
      Thank You,
      ~Linda

      • Hi,
        My name is Darrell. Franny is my caregiver and wife. I typed this to you Caroline to give you another view on the selection of medication and Tysabri. Fran and Darrell Beitel can be found on Facebook. She often talks and supports caregivers. I am more into core MS and Politics along with the bent mind of MS. I have passed this invite on to her. Thank you.

        Darrell

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