Decisions, decisions, decisions

I can’t tell you how many times or with how many different people I have had this SAME conversation. This time something changed.

I have been on Tysabri for almost 13 years. That is means close to 140 infusions. I don’t know the exact number, but I’m pretty sure Biogen (the company that makes the drug) could give you an exact number, as well as my JCV number, how many lesions I have on my brain and spinal cord, etc.

Facts we know:

  1. The longer you are on Tysabri, the more likely you are to develop a deadly brain virus called PML. Because of this, most doctors only prescribe Tysabri for a few years before recommending a different drug.
  2. While on Tysabri you have to have blood tests for the JC Virus every 6 months and an annual MRI to monitor your risks for developing PML.

Two years ago, not only did I test positive for the JC virus, but my numbers were quite high. (1 is bad, I was at 3.43.) My neurologist suggested that I consider changing to a different MS treatment. I refused. Tysabri has been a miracle drug for me. (Many posts about it) I did however agree to more frequent JCV testing and MRI’s. I am supposed to go every 4 months, but I haven’t because….well life.

Over the next 6 months, my JC numbers continued to climb to 4.69, so I made what I feel was another concession. Instead of getting an infusion of Tysabri, every 4 weeks, I would allow them to extend the time between doses to 6 weeks. (Personally, I hate the longer time in between infusions, because the last 3 weeks are slump weeks” for me, but my numbers have stopped increasing.) They are still high, but haven’t gone up, so that’s a good thing.

This last year I’ve noticed that I am more fatigued. I have trouble finding the right words and expressing my thoughts, and my legs are heavier and painful each night. I have been shrugging it off, and attributing it to the longer intervals between Tysabri infusions, the fact that I am getting older, and the additional stresses in my life. (taking care of my parents, covid, and dealing with people in general) , but my last MRI shows that I have new lesions in locations that correspond to my symptoms.

The entire time I was taking Tysabri (at 4 week intervals), I had no disease progression or increase in lesions. (Apparently a six week dosing schedule does not prevent relapses for me) The medical community considers the risks of pml too high for me to go back to a 4 week schedule, so maybe it’s finally time to change?

I’m scared that I am going to start having frequent relapses. I don’t want to go down that road again.

Before Tysabri, I was in a wheelchair. I know it’s not the end of the world, but still. I was severely depressed and was being hospitalized for MS flares approximately every 3 months. Not the kind of life I wanted to live.

I am also pretty scared of some of the side effects of the other drug options available. 😦

I come to wordpress when I need to “get out of my head”. Thank you for allowing me to do that, and reading along. It helps to not feel so alone.

10 thoughts on “Decisions, decisions, decisions

  1. I’m so sorry you’re having to deal with this Grace. I’m sure it has to be frustrating and scary all at once. You’re so strong and have been through so much, I know that you’ll handle this challenge with the same strength and *grace* with which you’ve faced everything else. (And since it’s been so long since we’ve “seen” each other here on WP, I’m the same Terri from the previous Reclaiming HOPE blog). Sending hugs your way sweet friend!

    Liked by 1 person

  2. Hate to hear this. That is a tough decision. Sounds like it’s time to try something different. Maybe several somethings. Maybe you can find one that works for you, without all the side effects.

    Liked by 1 person

  3. What a bitch! But from the way you describe it, is sounds as if the symptoms from PML might be making an appearance, so you really don’t have much of a choice. Hoping you can find something reasonably comparable. Would love to know whsat you wind up doing.

    Liked by 1 person

    1. After reading about all of the medications (did you know there were so many?), I have narrowed my choices down to Ocrevus, Rituxan, Kesempta, or possibly HSCT or something like that. Having more bloodwork done now to make sure I can start them

      Liked by 1 person

      1. I have been on Ocrevus for almost 3 years now. Like most of these drugs I don’t know if they help or not unless I stop taking them completely. All I can tell you is I don’t feel as shitty as I did for a couple of days after I was getting the cytoxin, and I like the fact that I only have to get it every six months. Plus it still has not progressed to other limbs. Good luck with whatever you wind up doing

        Liked by 1 person

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