My thoughts concerning the JC Virus and Tysabri

I had the blood drawn for the test to determine if I have the JC virus or not back at the beginning of the month when I last saw the specialist. She asked me, after getting the test, what my plans were if it came back positive. I thought about it for a second and replied that I was going to continue taking Tysabri. I have since had some time to think about that choice.

From what I understand, having the JC virus increases your risk for getting PML. However, not having the virus does not mean that you aren’t going to get it! It just means that your chances for not getting it look better. Either way you go about it, there is still the risk!

This got me thinking whether I made the right choice about staying on Tysabri or not. Do I really want to still take this risk if it turns out that I have the virus? Do I really want to put my family through that? This has been my thoughts over the last few weeks. Constantly!

I just think back to where I was before starting Tysabri. Granted, I have only had 5 infusions, but I would say the difference in where I was and where I am now is like night and day! And while I’m not real sure if it is Tysabri working well for me or just the natural course of MS, it boils down to a quality of life.

Before starting Tysabri, I was, pretty much, lucky to be able to make it through the normal work day. The fatigue was brutal! The weakness in my right leg was intense at times. Still wasn’t driving due to it! My patience level with my family was non-existent. I would blow a gasket before I could stop and think! I just, overall, felt like crap! It was very frustrating to not be able to do all the things that I used to do. The frustration probably contributed to my uneven temperament.

Since starting Tysabri, I am walking better! My energy level has increased to the point that I am now the last person in the house to get in bed when I was always the first to be asleep! Lol I love playing with my kid again! It doesn’t feel like work! I have been able to start getting out with friends again since I don’t turn into a pumpkin at 9 pm anymore. I have been able to start driving again! Albeit not for long distances but to have even that little bit of freedom back is awesome to me!!

So my quality of life has tremendously improved since starting Tysabri! Why would I want to give that up? I knew the risks when I started and they are still going to be there no matter what this virus test says (in my opinion)! My wife and I were talking last night and we both agreed that it is a question of quality of life! If something were to happen and I ended up getting PML in the next few years, the last years of my life would be good ones if things continue on the way they are going with Tysabri. That is the memory I want to leave with my son and family! The good times and not me being the unhappy, crabby, not able/wanting to do anything person that I was!

That is why I am choosing to stay on Tysabri no matter what the JC virus test results turn out to be. Selfish? Maybe. But this decision is what I have decided with the help of my wife an her love for me and my love for her and my son!


4 thoughts on “My thoughts concerning the JC Virus and Tysabri

  1. I so agree with you about quality over quantity. The first two years after my diagnosis I was determined to only take my Copaxone and be stronger than my symptoms. I thought if I eat like this or try any number of holistic remedies I would conquer and be healthier for it. Well, my wallet, social life, family relations and disposition were weakening at a steady pace. I finally realized that I want to be happy and feel as good as I can so I asked for help with my symptoms. I now take pills everyday along with an injection and I feel better!

    BTW, I’m in the MS is BS group with you and have recently started my own blog. It’s still very much in it’s infancy, but it’ll get there.

    Michelle 🙂

    • Thanks for reading, Michelle! 🙂 I will definitely check out your blog! Mine is still getting off the ground! But I like it as a way to get the things floating around in my head out. Also it’s a great way to keep track of all the things that I need to talk to my dr about so I won’t forget by the next time I see them!

    • I’m glad that it has helped! My only advice would be to weigh the risks heavily! Think long and hard! Talk it out with loved ones and you will eventually come to peace with a decision. Whether it be for it or against it! Best wishes for you on this journey!

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