A risk I'm no longer willing to take - written in January 2024

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.

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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.

Navigating London and other stuff

This post is well over due.

It's all about the October half term,  but now Christmas is creeping up and it's been sat in my draft box for ages! I just haven't been in the right frame of mind to write. It normally comes quite naturally to me, but recently it's like staring at a blank wall. However, I thought I should persevere and finish this post, because half term was a really big deal for me. 

So here we are....

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I was knackered and frazzled, but we had a great time at half term.

We decided to stay in London for a couple of nights, mainly to see My Neighbour Totoro at the Barbican Theatre. 

To many this wouldn't seem like a big deal (after all it's about one and a half hours on the train from Bristol) but to me, it was a MASSIVE deal. 

I hadn't experienced London with the kids before, and I hadn't been for a very long time (when I had better stamina).

I had built London up in my head to be this traumatic place where I would really really struggle. I worried about the practicalities of actually getting round, and the mental impact being in such a busy place would have.

But.....I did it. I coped. And yes I was exhausted afterwards, but it's done and it really wasn't as bad as expected! The kids were fantastic, and we all loved it. 

Si and Ed navigating the Underground

My main worry was whether I was going to cope with all the walking - particularly getting from one place to another in the Underground. I remember long concourses, and having to stand for long periods on the actual train, having no chance to rest. But actually, it was fine. Sure there was a lot of walking, but the actual trains were eerily quiet so more often than not, I managed to get a seat. Si planned our routes well, and because the flat we had was down the road from the Barbican, we were fairly close the the Barbican tube station, and therefore on the Circle line. From there we could get to where we needed to go easily and without changing. Like I said, we were lucky in the fact that I managed to get a seat. If we'd travelled in rush hour,  I'm sure it would have been a different story. 

The Natural History Museum 

I took my folding stick with me, but only needed it on the second day - when we went to the Natural History Museum. Even then I managed the Museum without the stick and it was only getting back to the flat where I struggled a bit. It was very busy at South Kensington tube, near where the museum is, so I did do more standing around then. 

The Blue Whale

My Neighbour Totoro at the Barbican Theatre was awesome! 

My Neighbour Totoro is a Studio Ghibli film that came out in the 1980s, which is charming and lovely, and the theatre production of it did not disappoint. As a family we've always been a big fan of Totoro....ever since Lib being a toddler where we used to sit down and watch the film together. I found the theatre production emotional because all of these memories came flooding back, and I don't mind telling you that I got a bit tearful! We all adored it and would highly recommend it. 

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So yeah a big milestone for me, and I think it's all thanks to Tysabri. It's given me my stamina back. 

'Doing' London unscathed has given me so much confidence though to try and do more and different stuff. There's a fine line between being practical and cautious, and pushing myself to do a bit more though. Sure I managed our London trip, but that was a few days out of many....and I shouldn't assume I'm always going to manage things like that. For example, I wouldn't have been able to manage it this weekend.

A case in point though is when we go to Slimbridge Wetland Centre. I nearly always hire a mobility scooter because it's quite a lot of walking. On the one hand, it seems sensible to preserve my energy, but London has given me the confidence to try it without the scooter, and relish in getting the exercise. 

And exercise is key here. 

My weight loss journey is still on-going (I've lost nearly a stone so far) but I need to push on, so exercise and maintaining that 'gumption' is needed. I always find it hard to motivate myself in the winter though....I just want to hunker down and hibernate (like most people!). The frustrating thing though is that I know I'll feel better and have more energy when I've lost weight...it's just getting there. 

But Christmas is just around the corner...and my 40th birthday after that....so celebrations will be abound and I. must. not. put. it. all. back. on! 

The Tysabri Quandary

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. 

Going ahead with Tysabri

Becoming Ill With Multiple Sclerosis

I know that sounds ridiculous - I mean, I have MS, I'm ill already, right?

What I mean is though, how is MS affected when you become ill with something else.
I wanted to write this post after lying in bed for two days feeling miserable. I had my 28th (!) round of Tysabri this Tuesday, and it's obviously flared something up, because I just couldn't get out of bed.

They do warn me that if I have even a whiff of an infection before Tysabri, then it would get 10 times worse. It's because the drug is an immune suppressant. Needless to say I must have had a bit of a virus of something, because I. felt. awful.

But Tysabri is one thing. Even without being on the drug, illness and Multiple Sclerosis don't mix. MS causes the sufferer to be more susceptible to infections (because of the hay-wire immune system), and once an infection is rife, the body is also slower to react in battling it. Bad illnesses can cause relapses, and I've learnt that it's always important to take illness seriously. Even if it's just a cold.
Get as must rest as possible. I cannot stress that enough. Rest helps the body mend itself as efficiently as possible, which when you have a faulty immune system, gives you the best chance to get better. Drink plenty of fluids and be easy on yourself. Luckily I'm not ill that often, but when I am I'm always get knocked for six.

It's scary because though I rarely have a relapse from being ill, but I have had pseudo-relapses. This is where the infection causes MS symptoms (such a fatigue, tingles, stiffness, pain). My walking does get affected whenever I'm ill. I've been using a stick today because I'm still a bit dizzy and stiff. It's never a nice feeling having to use my stick, but c'est la vie.

I'm lucky though, because I'm in a position where I can rest if I need to. Si can work flexibly, and Sheila's been a huge help. Luckily for me though, after two days of sleep, I'm out of bed today. We're going on holiday tomorrow so it was good timing. I'm pretty sure my stamina and walking isn't going to be great while away, but I have things in place. I have my stick, and we're taking the mobility scooter so I can go out for the day to Folly Farm (a mad zoo/farm/funfair hybrid...as you can imagine the kids love it!). I still feel self-conscious on the scooter, but then the more confident side of me thinks 'f**k it'. After all, if it's what I need on this occasion after being ill, then that's the way it is. Why should I miss out on all the fun?

Me on the scooter last year at Monkey World. A fun day out!

Tysabri - A Year On

Here's the guest blog post I recently had published on the MS-UK website.
It's all about Tysabri and what I've found after being on treatment for a year. Enjoy!

https://multiplesclerosisuk.wordpress.com/2018/01/22/guest-blog-tysabri-one-year-on/

My further tales of MS, motherhood, bipolar and so much more can now be found at 

https://talesoftingles.substack.com/

Click on the link to check it out and subscribe!

Chloe

Autumn has arrived...

Great British Bake Off on? Check.
Considering putting on the heating? Check.
Raided the jumper box under the bed? Check.

Yep...Autumn is officially here.
My favourite season!
My body literally gives a sign of relief when it gets cooler. But great things have occurred this year..after all I've managed to go through Spring and Summer without having another relapse!
Tysabri must be working wonders. It's such a nice feeling to think that I'm on some drugs that are actually helping now. They do tire me out after I've had had the infusion, but that's a small price to pay for a drug this good. My one fear is that one day I'll be positive for the JC virus though. If you remember, the JC virus is a dormant virus that, when it becomes active, greatly increases my chances of getting PML (a brain infection). Because of the way Tysabri works, the body can't fight the infection and so PML can lead to severe disability or death. Often people remain on Tysabri even though they become positive for the JC virus, because the chances of getting PML are still 1 in 1000. But as it's 1 in 10000 at the moment, that's quite a leap, and one I'm not sure I'd be willing to take by carrying on with Tysabri. I guess it's not worth thinking about now, after all it may never happen, but I confess it has been in the back of my mind recently.

Back to the hear and now though, and I'm glad that we're starting to get back into a routine as a family too. Lib has started back at school (as Year One!) and Ed is still enjoying nursery, thank goodness, so things are ticking along nicely. This Saturday we managed a day trip to Bath to go the Egg Theatre to see Sarah and Duck. There was much walking and a bit of standing around, namely on the train, but I managed it. That being said though, I was in bed the following day, and limping the day after that. I guess it's still swings and roundabouts at the moment. It was nice to get out and have a family day together though. We just need to find that balance between having a nice day out, but one that doesn't tire me out too much :)

Oooh....I've had another guest blog post published on the MS-UK website. They have asked me to contribute once a month, which has really perked me up because I've had complete writers block recently. Even writing this has been a challenge.
The link to the blog post is here: Summer Holiday Musings
I shall persevere though. I've been writing children's books too, and as I'm getting better with each one, I'm hoping that one day I'll be able to be published. That's the dream anyway. It just seems like a bit of an uphill struggle at the moment. Onwards and upwards though!

Ed loved his first train journey!!

Tysabri Number 8

Today was my 8th Tysabri infusion and for some reason it really drained me.

After the first couple I felt positively buzzing straight after, but maybe that was because of relief that it had gone ok. But this time it has been a challenge. Everything went fine (I even looked at the canula being inserted this time...and didn't pass out! Yay for me! ;), but I just felt completely shattered following the infusion. Luckily there were enough hands on deck for me to be able to have a lie down.
It's like this time has been mentally as well as physically draining. I have felt low and down in the dumps this afternoon. I've been dwelling on my future more and more, and when I see other patients at different stages of their MS it brings it home to me how unpredictable my health is. Like Si says, there's no point in worrying about a future that might not be, but it's hard sometimes.

Looking to the here and now though and Tysabri seems to be doing some good.
I've generally had more good days than bad, which is noticeable particularly at the weekends. I went through a stage when I would need to rest every weekend because I was so fatigued after the week, but I've had some lovely weekends recently when I've been able to make the most of 'family time'. That says a lot, especially considering how hot it's been in recent days.

I wonder whether Tysabri has made me more resilient to the heat? It has made me reflect though on how over past summers I wasn't in a good remission, so the heat affected me particularly badly. Now Tysabri has pushed me into a strong remission, I can cope with the temperature changes much more successfully. Thank goodness! It's been so nice to be be able to be out in the sun with the kids and not worry about it wiping me out for the whole day.

Anyway....buck up Chloe. Tomorrow is a new day, and you're going to need your wits about you to cope with the school holidays!