I've been on Tysabri for 4 and a half years now, and I haven't had a relapse in that time. That's flipping good going!
It's been amazing for me - it's improved my stamina, shrunken active brain lesions, and made me feel like a 'normal' person. Sure I still get day to day symptoms, such as fatigue and tingles if I push myself, but overall I've been in good health since starting it. In fact when I compare myself to how I was before, I've been doing extremely well.
Like I said in a previous post, it's been 20 years since my diagnosis. How did I imagine myself in 20 years when I was first diagnosed? Probably in a wheelchair if I'm totally honest. There weren't the drugs available that there are now, so my outlook wasn't great. So that's why I'm so pleased that I have found Tysabri.
It has kept the beast at bay and has given me real quality of life.
However.
If you may remember from previous posts, when you are taking Tysabri you are at a greater risk of developing a brain infection called PML. Your risk is determined by whether you have a virus called the John Cunningham (JC) virus. Actually a large number of the population have this virus, with no symptoms and I've always been JC negative.
Until now.
I was informed by the MS team when I went for my infusion on Wednesday that my JC test had come back positive. I was pretty shocked if I'm honest and it left me with a real quandary.
The chance of me developing PML has now gone from 1 in 10,000 to 1 in 3000. A big change.
I was pretty shocked when they told me, but I took the time to talk through it with my loved ones to determine what to do. I felt like I needed to take into account that I have a young family, but it was when I spoke to my consultant that it really helped me make the decision on whether to continue or not. He assured me that yes, the chances are higher than they were, but I was still considered low risk. He said that normally they would advise someone to come off Tysabri when the odds were more like 1 in 100 (!) so he very strongly advised that I stay on it.
He said I needed to think of my MS, and the benefits Tysabri have given me. He also told me that 1 in 10 people suffer a very severe relapse after coming off the medication, and who knows what permanent damage that could do. Overall, I was just very glad that my consultant was clear with me. If he had refused to advise me, and left the ball squarely in my court, I just don't know what I would have done. I feel like I have all the facts though, and I hope that I have made the right decision by opting to stay on Tysabri, regardless of the risks. The more I think about it, the more I feel I need to consider my quality of the life I have with Si and the kids. I've been so much better on Tysabri, and I can take part in a lot more than I used to be able to do. I just can't get my head around going back to how I was before, and giving it up. I can do so much more than I could before - I can walk up to school and pick the kids up. I can walk the dog. I can see things positively, and I don't feel like I'm stretching myself just by living life. Life is so much better.
So regardless of the risks I'm going to stay on it. It has been a quandary though, and I know some may find my decision crazy, but as my consultant said it's all about keeping this disease at bay and I think he's right. You know I've found it really hard to write this post, but I'm not sure why. It could be that there are conflicting emotions, but it's been good to lay it all down and as usual blogging about it has been cathartic and helped me assess the situation.
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