This post was written for Substack in January, but wanted to include it here because of what's going to happen over the next few months. I've decided to post on Substack AND here, to keep everyone in the loop. :)
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- Written January 2024 -
Been a bit anxious recently. I found out that I’m JC positive (again) at the hospital the other day and alarm bells have started ringing.
Photo by Diana Polekhina on Unsplash
As disease modifying treatments go for MS, I’ve been on a quite a few.
After being on a drugs trial, it started all those years ago with Rebif injections in 2003. Tried it for 4 years, and they concluded it wasn’t doing anything because I was still have the same number of relapses. Bear in mind please that I had a fear of needles, injections and HATED my autoinjector.
I changed to Copaxone in 2007. I hated that too! Injecting every day was awful. It used to take me half an hour of sitting there to pluck up the courage to do it! My mental health was not good.
Again, it was concluded that it wasn’t working, so next I gave Avonex a go (after being turned down for Tysabri) in 2008 for two years before I stopped to start trying for a family in 2010.
When I was done with having kids, the next up was Tecfidera, an oral medication. Great!’ I thought ‘no more needles!’. Yet again, Tecfidera just wasn’t doing it and when I went back to 2 relapses a year, I was accepted to start Tysabri.
That was in 2016, and started in the December of that year.
Tysabri wasn’t perfect for sure. It was a highly effective drug, but there was a higher risk of a brain infection called Progressive multifocal leukoencephalopathy (PML). The risks were fairly small…I think when I first started it was about 1 in every 10,000 of patients on Tysabri.
A risk I was willing to take for a better quality of life. I was a Mum now and needed to do what I could to make things easier for me and the whole family. It wasn’t that I disregarded the risks, far from it, but I was just willing to give it a shot.
Anyway, time passes so quickly, and before I know it I’ve been on Tysabri for 7 years!
It’s been a marvel, it really has. My fatigue is better, I’m fairly stable MS wise with no major relapses since starting. Considering I was having, on average, at least 1 every year since diagnosis in that was incredible!
So what’s the hitch?
Well, they test you for something called the JC virus when on it. If you are JC positive, your chances of getting PML greatly increase. I became positive a couple of years ago for the first time, and it was a shock. It gave me a wobble, and I gained the advice of my consultant at the time. He advised to stay on it, as even though I was JC positive, the risks were still quite low. I had to weigh everything up, and I decided to stay on it.
I went back to being JC negative until recently where I got the shock again of being positive. Now I thought…I really need to think about this.
The amount of time I had been on Tysabri (the risks increase for every year taking it) plus now being JC positive again meant my chances of getting PML had increased to about 1 in 1000.
Nah. Can’t do it.
For me, that’s too high…and I’ve started feeling like a ticking time bomb (excuse the over-exaggeration).
So I have it in my mind to change, even if it means going downhill. Or having to do injections again.
The issue is that even something like Kesimpta (the drug I was thinking of changing to) there’s still a PML risk. There haven’t been any cases of PML with Kesimpta patients, but there are still risks and I guess they have to cover their backs by issuing the warning.
I feel completely between a rock and a hard place.
On the one hand, I stay on Tysabri pretty much symptom free, with a 1 in 1000 chance of developing PML. (To put things into perspective….you have 1 in 1000 chance of cracking an egg to find a double yolk. And that’s happened to me twice in the last couple of years.)
OR…I come off. Reduce the risks of PML, change to something else (as highly effective as Tysabri apparently) but potentially start to feel like sh*t again in the meantime. I’ll be at risk of a humdinger of a relapse coming off Tysabri, that could do immeasurable damage. But again….that’s a maybe. Worst case scenario kind of thing.
So yeah….I’m stressing out here folks! My gut reaction says come off Tysabri. We have an unlucky family when it comes to illness and chronic conditions, and I feel like I’m tempting fate.
I guess I need to assume I’m going to go downhill and plan accordingly. But it’s soo hard. I don’t want to go back to that state of health (or worse) that I was in before! You have to remember that I’ve been diagnosed for nearly 23 years, and so my chances of feeling better without Tysabri are waning. Disability will come creeping back.
Gah!
I think I’ve decided to come off for now, but it still needs to be signed off by my consultant and a committee before I can stop so I will keep you posted.
For now, all I can do is be proactive and positive about this change. Firstly, get healthier by eating better and looking after myself. Reduce stress as much as possible - because we all know what THAT does to MS, right? - and keep an eye out for the signs of deterioration and don’t push myself.
Best laid plans and all that!
Until next time….eeek.
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