My MS hurdles- Part 4: Taking Tysabri to treat MS 

A very warm welcome to the fourth article in my series exploring the different MS hurdles I face in life.  In this article I’ll be sharing my experiences of taking Tysabri as a treatment to reduce my MS relapses over the past year, focusing on how it’s impacted on my MS progression and my day to day life.

If you haven’t read the earlier parts of the series yet I highly recommend taking a look at my article on living with a chronic illness as this helps to explain my personal MS difficulties in more detail.  I’ve also written an in-depth piece on how I decided on the best treatment options for me which really helps to put my decision to start taking Tysabri into context.  I’ve had some great feedback since that article from readers who have told me how much they’re looking forward to reading about what taking Tysabri is really like so I hope this review meets all of your expectations!

I’ve been taking Tysabri as a treatment to reduce my MS relapses for a year now and I can’t quite believe it.  It doesn’t seem like five minutes ago that I first made the difficult decision to go down this particular treatment route!  

I think it’s important to point out that I have absolutely no interest in trying to sway my readers to a particular treatment by claiming any one treatment is best or by suggesting I have all the answers.  I just want to share my personal experiences to help you understand what taking Tysabri has been like for me, including the good and the bad points.  My experiences could be very different from yours but will hopefully help you to form a clearer picture nonetheless.  I would have loved to read a detailed article like this when I was trying to decide which treatment to take so I’ve not held anything back; this is what the reality of Tysabri has been for me over the past year, warts and all!

Tysabri: The basics

Tysabri is a treatment for Relaspsing Multiple Sclerosis taken as an intravenous infusion every 4 weeks, usually in a hospital infusion clinic.  It’s classed as highly effective as it helps to reduce relapse by around 70% and can also slow down the build-up of MS-related disability.  The more common recorded side effects of taking this treatment are headaches and increased chance of infections.  An extremely rare side effect of Tysabri is the risk of developing PML.

In case you’re not aware, PML is a brain infection which can lead to severe disability or death. You’re a lot more likely to develop PML if you have at some point been infected with the JC virus (which around 50% of people have), if not the risk of developing PML is extremely low.

Luckily, I am currently JC virus negative, which made my decision to take Tysabri a lot easier!

My initial thoughts on Tysabri

I didn’t really know what to expect when I started taking Tysabri, I was in a very bad way following a recent relapse and really struggling.  I’d heard very positive things about the treatment from my MS nurses and consultant but I still wasn’t all that hopeful.  With my illness leaving me feeling like a shell of my former self I’d learned not to build my hopes up too much as the disappointment I often felt when things didn’t go to plan was too hard to deal with.

I’d also read as many snippets of information and personal accounts online as I could (when I was lucky enough to find any).  It felt like there was a jigsaw puzzle of opinion I was trying to fit together to form a complete picture in my mind, however there were plenty of pieces missing and many different viewpoints which didn’t at all fit together!  There were extreme claims of how Tysabri was a miracle treatment, others focused on the horrendous potential side effects or how useless it had been.  All I knew was that I would have to give it a try to see for myself, the medical facts and figures offered some confidence but ultimately there were too many factors to successfully predict an individual outcome.

Receiving the infusions

I’d had steroid infusions before so I wasn’t too worried about how the infusion would feel.  Generally, as the nurses in the infusion suite are so well-practised, putting in a cannula (a small tube placed in a vein) is a really quick and fairly painless process.  Drinking plenty of water beforehand can make finding a vein a lot easier so I always try to remember to do this.

I usually have to spend anywhere between two and a half and three hours at the hospital.  Half an hour with an MS nurse for a pre-treatment assessment, an hour for the Tysabri infusion, half an hour for a saline flush and half an hour for monitoring, if everything is running smoothly and on time.  It can sometimes drag but I tend to spend the time working on my blog, which keeps me busy!  The nurses are really friendly and there are usually a few other MSers in the infusion suite receiving treatment which has been great for comparing notes and also for helping to normalise the whole process.  When I first started taking Tysabri I remember looking around and thinking well if you’re all happily taking all this in your stride then I can too!  

I also remember a small part of me also expecting to be instantly struck down with PML as soon as I had my first treatment.  I know getting PML so quickly is unheard of and I don’t worry so much about it now as I feel more comfortable with the treatment, the hospital are very good at monitoring my health and I remind myself that I’m JC virus negative.  I meet with an MS nurse to assess my PML risk and check for any infections before every infusion, which is also great for raising concerns or mentioning any symptoms I’m experiencing.

During the infusion I really notice a difference with my energy levels.  I usually have my infusion in the afternoon, when I tend to need a rest but taking Tysabri, to me, feels like I’ve had a massive intake of caffeine and I’m buzzing with energy.  Sadly this only lasts until the evening when the effects wear off and I get really tired.

Tysabri side effects

The main side effect I experience regularly is being so much more susceptible to cold viruses I am.  This can be really difficult to live with as any cold or infection really aggravates my MS and makes my symptoms so much worse.  There are times when I’ve felt completely terrible and been pretty much bed bound, which is really hard as my toddler usually falls ill around the same time!

In more recent months, although the frequency of my number of colds is still high, they don’t seem to be flooring my quite so completely and although I need to rest more I don’t feel like absolute death!

The other side effects I’ve noticed really aren’t that bad.  A couple of times during the night following my infusion I’ve had hot, itchy skin but this has always eased by morning and I think it’s because I haven’t drunk enough water.  Sometimes I will get a slight headache in the days following my treatment which taking paracetamol usually helps to reduce.

How I’ve felt throughout the year

It’s hard to say exactly how much of how I’ve felt throughout the year has been due to my taking Tysabri as I don’t really have anything I can compare it against but through either helping to reduce my inflammation or by stopping relapses I think it’s definitely had an impact.

All I know is there is a big difference between when I first started my treatment and how I feel now.  That is not to say that Tysabri is a quick fix or that I’m back to ‘normal’, not in the slightest.  My Tysabri journey so far hasn’t been an easy one and there have definitely been plenty of ups and downs but the important thing is that I don’t feel as bloody awful as I used to and in that way it’s helped to give me hope.  I feel a lot more positive about life now too.

The first six months

The month that I first started treatment I was really tired for a few days then felt better than I had in ages for a couple of weeks before crashing right back down and desperately feeling like I needed my treatment again.

The second month started off similar and I felt even better, before having what I thought was a relapse but was actually a pseudo relapse from overdoing things and dealing with some stressful situations in my personal life.

As the next few months went on I would bounce between feeling a slight improvement to feeling like my treatment was wearing off or falling ill with a cold, the effects of which would often stay with me until my next treatment.

I was also having a hard time of life generally which I don’t think helped.  I was putting pressure on myself to try to return to work which led to another pseudo relapse and set me back again.  I also had loads of anxiety and I was getting fed up of my treatment not having the results I wanted.  I’d had a small taste of feeling a bit better at the start of my treatment and it had made me hopeful, as had the consultant I saw who told me how well patients did on it or the other people with MS I spoke to who said such good things about how it helped them, including one woman who had gone from a wheelchair to walking unaided!  Of course, I heard other accounts of it only helping a little or not at all but I now found that possibility difficult to accept.

The last six months

By now it was Autumn and the start of cold and flu season and I was being completely wiped out by one cold after another.  I’d started to accept that I wasn’t well enough to work and was finally starting to look after myself a bit better but the cold viruses were all-consuming and relentless and I was still struggling.  By this point I’d definitely noticed that, colds aside, how I felt during the month had evened out a lot.  I didn’t feel so good after my treatment but I didn’t get such a noticeable slump towards the end either.

Around 10 months into my treatment though I started to notice a definite improvement in how clearly I was able to think.  The brain fog was still there but it wasn’t as bad, I wasn’t quite as dizzy and some days the fatigue was a little less intense (although ever present).  

Fast forward a couple of months and I’m still catching plenty of colds but I’m managing them much better.  When I wake up I still have an MS hangover but it’s lifted just a little.  I still feel like I’m on the outside looking in when it comes to my own brain but I’m not quite as much removed.  It was a long time coming but I feel like an improvement, no matter how small, is definitely a good thing.

Is my MS progressing?

I had my annual MRI around three months ago which revealed that I had no new lesions or noticeable changes since my previous MRI a year earlier.  This was great news and it really gives me confidence that the treatment is doing it’s job and holding off those horrid relapses.  At the end of the day Tysabri isn’t prescribed to me to help my MS symptoms it’s there to stop me relapsing and it seems to be doing it’s job well, anything else is a highly appreciated bonus.

Moving forward

I’m feeling positive about my treatment but I’m still a bit wary of expecting too much from it.  It’s hard not to get carried away now I’ve noticed a small improvement and although I’m hopeful, there is no guarantee that this will last, or that I will continue to get better.  Living with MS has taught me to take what I can get and accept that things won’t always go the way I want them to.

As things stand, I’d like to be still taking this treatment a year from now, reporting my 2 year review to you but if I start relapsing again or become JC virus positive then I would have to reconsider Tysabri as my prefered treatment option.  Ocrelizumab (Ocrevus) is another treatment which looks very promising and has just been approved for use in America, hopefully the UK won’t be too far behind as it would be great to have a really effective treatment option available as an alternative, although it still comes with it’s own risks to consider.

I’d love to be able to tell you that Tysabri is definitely a brilliant treatment or, on the flip side, confidently state that it’s not worth bothering with but the reality is that I can’t.  There have been many pros and cons to taking this treatment over the year but I know one thing for certain and that’s that letting my MS run wild would be so much worse.  

I think if I was to offer some advice on taking Tysabri, based on my own experiences, it’s that although it’s helped ease my symptoms a bit and my MS hasn’t progressed; please don’t expect too much from the treatment too soon.  It takes many months for it to become truly effective and at times it can feel like a game of snakes and ladders, both physically and emotionally.  I am much happier than I have been as I’m relapse-free for the past year and my MS symptoms have also eased slightly.  It’s taken me nearly a year to get here but it feels worth the wait.

I wish you all the best with planning your own course of treatment and I really hope that this article has helped to provide a real-life perspective on taking Tysabri over the course of a year.  Please feel free to ask away if you’d like any more details or information, I won’t hold back!

Is Tysabri a treatment option you’re considering?  If you’re taking/have taken Tysabri already then I’d love to compare notes!

I have more articles for my MS hurdles series on the way, including living with fatigue and brain fog but as this series is aimed at helping you I’d also love to hear any suggestions for what you’d like me to share.  Seriously, let me know what will help you the most and I will give it my best shot!