Today I had an appointment with my neurologist, who gave me the results of my recent MRI scan. Compared to my scan of March 2009, it showed a decrease in both the number and the size of the lesions in my brain.
This is A Good Thing: it means my relapse rate has been stalled, and my poor beleaguered body has been able to start repairing some of the myelin damage caused by MS.
How much of this is due to the Tysabri infusions I’ve been on for the last two years, and how much is due to me finally acknowledging that the day job with its horrendous commute was no longer sustainable, I’ll probably never know. Bit of both, most likely.
Since I gave up work I’ve been able to get the rest I need, and be kinder to myself. That means on a shitty day, if I don’t get out of bed until 11am, so be it. On good days I’m up at 7:30. Most days it’s somewhere in between. Either way, these results confirm that quitting my job and changing my treatment regimen were the right things to do.
One small winged insect in the ointment: Tysabri (natalizumab) has an immuno-suppressant effect, and some immuno-compromised people, like MS patients and transplant recipients given anti-rejection drugs, have gone on to develop PML, or progressive multifocal leukoencephalopathy, which is often fatal.
The science bit: PML is triggered by the JC virus, which is widespread in the general population, lying latent in the gastrointestinal tract. In an immuno-compromised patient it can “reactivate” and trigger PML, because JCV can cross the blood-brain barrier and directly infect (and destroy) the oligodendrocytes which protect the myelin sheath around the nerve-cells’ axons in the central nervous system – that’s your brain and spinal cord.
I was blood-tested last week to see if I’ve been exposed to JCV. The general risk of developing PML is about 1 in 1,000; if I’ve been exposed, that rises to about 1 in 400. Given that somewhere north of 70% of the population will have been exposed to it (usually in childhood) this, as you can imagine, gives me some food for thought.
I’ve had two very stable, relapse-free years with Tysabri. Back in 2009, when it became apparent that the beta-interferon therapy was no longer working, I looked at the risks, weighed up the benefits, and decided Tysabri was the best treatment option for me and my highly-active at the time MS. I still think that is the case, but when the blood-test results come in, if my risk profile changes, I am going to have to think through my choices once more and see if I’m still comfortable with it.
UPDATE:
I got the result of my blood test and I am negative for JCV. This means my chances of developing PML as a result of my Tysabri infusions have dropped to around 1 in 7,000. I think that deserves a woot, don’t you? WOOT!
Hi Ellie. I`m a fellow blogger who came across your site recently. I`m currently doing a research about pml complications, that is how I found this post.
I`m sorry to hear about your disease, but the way you deal with it can be inspiration for many. I`m glad to hear that tysabri worked out well for you. The really scary thing about that medication is surely the pml complication that you mentioned, but the risk rate according to statistics is very low. I know it`s somehow inhuman to quote statistics, but this time is a good one.
All I can do is to wish you well, and strength to overcome any obstacles that may come in your way.
Best regards,
John.
Hi John,
Thanks for your comment. I’ve spoken to a few people with MS who’ve been put off trying Tysabri as a treatment purely because of the risk s of PML. It certainly gave me pause when my consultant said he’d like to move me onto that treatment, but I’d already tried beta-interferon therapy and it had ceased to be effective, so at that time I had the choice of Tysabri or nothing, pretty much. Since I was already deteriorating, it made the decision rather easy.
Apart from trivial sensory symptoms and a complete lack of any sort of stamina, I’ve been extremely stable on Tysabri, so until something better comes along (or contra-indications emerge) I think I’ll be sticking with it. I could do without the four-weekly day in the hospital, but all things considered it could be a lot worse!
Many thanks for the kind words, and good luck with your research project. I hope you find the information you need.
Oh Elpseth! to write like you and not be 100% healthy! You are an amazing lady!
Thrilling to read your book, but to see that you have so much else to struggle with – I am blown away! I haven’t finished Songs of the Earth yet.. and am already holding out for the next one!
Go girl! you are fantastic!
Nicky
Thanks for the kind words, Nicky; I’m so pleased you’re enjoying the book!
MS is a part of my life that I just have to deal with. I have it, like I have green eyes, but it’s not *who* I am. I’d be lying if I said there weren’t times when a positive outlook is a bit harder to maintain, and PJs, duvet and Ben & Jerry’s is the order of the day, but I tend to get bored with self-pity very quickly. Writing my ass off is much more fun.
I was not aware of this challenge you face, Elspeth. Have you got the blood test back yet? Sending positive vibes your way, and am definitely even more impressed with what you’ve accomplished. People with okay health just take it for granted, sometimes. Good luck to you. Reb
I try not to make a big deal about it, but I don’t hide it either, I just try to deal with it as best I can. Besides, if people don’t know I’m sick, they don’t know to make allowances when I can’t walk as fast as them or can’t stand for long.
I haven’t heard back about the blood test yet, but my neurologist said he would write to me when he got the results. Fingers crossed I’ll hear soon. Thanks for the kind words!