In her latest guest blog Chloe gives us an insight into her first year of Tysabri treatment…
I can’t believe it’s been a year since I embarked on my new multiple sclerosis (MS) treatment, Tysabri.
What I started in trepidation has now become my lifeline. It has really transformed my life…but let’s start from the beginning.
As treatments go, it’s pretty non-invasive. I remember the first time well…I was nervous. I used to have a fear of having cannulas put in (after an unpleasant experience when I was younger) so to have one every month was nerve-racking. I sat down in the high backed treatment room chair, my heart fluttering. Heather, my MS nurse, had just started at the MS unit herself, so we were embarking on this journey together.
So after basic observations (temperature, blood pressure) were taken it was time for the cannula. And what a fuss I had made! I had built it up into something awful in my head, but it was absolutely fine. It was no more painful than having a blood test, and I’ve had plenty of those in the past! What a relief it was though.
Once the cannula was in, I was rigged up to my first infusion and we were away. I couldn’t feel anything going in, there was certainly no stinging or irritation, so all I had to do was sit back and relax. Heather joked that it was ‘enforced rest’ for me because, what with the children, it’s very rare that I get an hour in the day to just sit back and read a book.
The infusion took roughly an hour, and then I had to sit and wait for another hour to make sure I didn’t have any ill effects. There were no side-effects for me at all. If anything I felt quite buzzed up! It was probably from the relief!
The whole appointment took 2 hours, and then I was sent on my merry way.
The ‘buzzed up’ feeling lasted a day or two afterwards. I felt stronger and more energetic.
13 infusions down, and a whole year later and I feel like I can reflect now on any positive effect Tysabri has had.
Firstly, I haven’t had a relapse since I have started. I normally have at least one relapse a year, so already that is a very good sign and shows that something positive is going on. I don’t get the ‘buzzed up’ feeling after treatment any more (if anything I come out feeling tired), but every month is the same non-painful and simple procedure.
I can honestly say that I can do more now than before. Tysabri isn’t meant to get rid of day-to-day symptoms such as fatigue, but what it has done has pushed me into a good state of remission. My symptoms are manageable, and being able to do more exercise, I feel healthier. At the end of each month I do find myself flagging a bit, so I look forward to my appointments so I can get ‘topped up’ again.
I am so happy to have found a treatment that finally works for me. I had previously tried Rebif, Copaxone, Avonex, and Tecfidera, but none had helped reduce down my rate of relapses. I was in a bad place with my depression also at a peak, so Tysabri really felt like a light at the end of a tunnel.
But of course, there have to be down sides.
Firstly, Tysabri is only eligible for those who have two or more severe relapses in a year. I was ‘lucky’ in that after two relapses close together I was now eligible to try it, but for years I had just missed out.
Secondly, there’s a risk of developing Progressive multifocal leukoencephalopathy (PML).
Tysabri has its fair share of common side effects (tiredness, headache, muscle pain, to name a few) but a less common and extremely serious side effect can be contracting a brain infection called PML (Progressive multifocal leukoencephalopathy). This can lead to severe disability or even death. A test is done before treatment to see whether you have something called the JC virus. If you are positive, then it increases your chances of contracting PML from 1 in 10,000 to 1 in 1,000.
For the past year, I have been JC negative, so for me the positives outweigh the negative risks. However, would I continue on treatment if I turn out to be JC positive? That’s a really tricky question and one I will have to dwell on if the situation arises. I have met other people on Tysabri who are JC positive, but carry on with treatment anyway, but I’m not sure whether I would feel comfortable taking the extra risk.
That’s a topic for another day though. So far Tysabri has turned out to be a positive experience, and it’s allowed me to take on a new lease of life. I can make plans again without having to worry about cancelling them, I can take the dog for a walk independently and confidently and can play with my children without getting too tired. Long may it continue!
You can follow Chloe’s story at tantrumsandtingles.blogspot.co.uk.