Category: lemtrada

Lemtrada Round 1 – The Aftermath

Two weeks ago I was sat in hospital (eagerly?) awaiting the start of Round 1 of Lemtrada. Since then, I’ve really not done a lot except for sleep and worry about whether my salad is clean and my meat is properly cooked (more on that in a future blog!)

I didn’t really have an expectation on how I would be feeling after treatment. I knew it wouldn’t be great as I was sent home with a six week sick note, but I’d heard really mixed reviews from other people. Some people were back to work within a week. Others were still struggling six months on. As with everything where MS is concerned, it is in no way predictable.

That first night home, all I really wanted for tea was takeaway pizza. The food in hospital had tasted of next to nothing, so I just wanted my old favourite! I duly ordered pizza with wedges and even treated myself to a dessert. I quickly discovered that there was not a chance I was going to make it through even half my pizza, never mind all the extras. My paranoia about food meant that there was no way I was going to eat it the next day out the fridge, so Dave was delighted to be given my leftovers! Over the subsequent days it has become apparent that Lemtrada has not only taken my white blood cells, but my appetite with it! Oddly enough, one of my biggest worries in hospital had been putting on weight as that’s something I feel I constantly battle with anyway. I’d heard stories of people piling on weight in hospital and in the time after from the steroids, but luckily that hasn’t affected me.

Anyway, I digress, after struggling down a bit of pizza, I fell asleep for three hours. I woke up for an hour to watch Corrie on catch-up, then fell back to sleep for 11 more. Dave was an absolute hero through the weekend, waiting on me more or less hand and foot. He made sure I ate (I was too tired to even think of stuff to eat), and kept nagging me to drink more fluid.

By Sunday, I had a serious case of cabin fever so Dave and I went out for a drive and a trip to my beloved Starbucks! Just getting dressed to go out exhausted me and I was ready to go back to bed again. A bit of fresh air was just what I needed though and I was grateful for a change of scenery.

Since that weekend, the effects of Lemtrada have varied daily. Wednesday through to Saturday were bad days as I had a terrible headache. On reflection, this was probably down to dehydration. The medication is giving me hot and cold sweats for a good few hours after taking it so I’ve come to realise that it’s important that I continue to consume the amount of water that I did in hospital. Yesterday on the other hand was a great day and I made it through the day for the first time without a nap

Yesterday, I managed to look more or less human for the first time in over a week!

The biggest impact, aside from feeling shattered has been in my legs. They just feel so heavy. I talked about”elephant legs” in a previous blog post and it feels like that constantly. The first few days after I got out of hospital they were a different kind of weak – likely due to the fact that I’d been laid up in bed for a week with limited movement.

It’s funny, because on the days I feel good, I feel like I could go and smash a session in the gym. Trouble is, just walking up the stairs can make that good day, bad. As long as I sit on my arse reading a book, soaking up the sun or binge watching Grey’s Anatomy, I feel great!

Doctor Reg! Mum and Dad’s doggo has been keeping me company

For the most part, they can’t stop me smiling! I’m having a lovely time at the moment recovering with my family down in Essex and will be down until next Sunday. We’ve got a few plans between now and then which include going down to the seafront (my happy place), visiting my Grandparents who have just moved a couple of hours away and catching up with Lucy. Enough to keep me busy. But not too busy!





They can’t stop me smiling!

Yesterday morning, in amongst the euphoria of going home, I crashed. Really crashed. I couldn’t be bothered to put my bra on. Every day I’ve had a routine of having a shower, doing my hair and putting my face on, in the interests of feeling a little more human.

Yesterday, I couldn’t care less about feeling human though. I was bloody knackered and just wanted to sleep. I can only liken it to feeling like coming down with the flu. And I don’t just mean a cold. I mean full blown, can’t drag your body out of bed, flu.

I mean, what are these MS warriors people speak of? Cause there ain’t one here! I felt pathetic!

I thought I’d got away with the rash too but I woke up looking like I had hives. Eurax cream, whilst messy was an absolute god send though as it really eased the itching. My nurse had other ideas though and I ended up with the two doses of intravenous piriton, one either side of the Lemtrada infusion.

I kept dozing in my infusion yesterday, I was definitely feeling the effects of not having steroids on Thursday!

Eventually, by 3.30 I was allowed home. Walking through the door at 4.15 was brilliant. I was so pleased to see Poppy and to just sink into an arm chair.

I managed about 2 slices of pizza (despite declaring all I wanted was pizza!) and then fell asleep for about 3 hours. I managed to get up for an hour and catch up on Corrie but then flaked out again at 11 and didn’t wake until about 10 this morning!

Even the little things are exhausting me today. My legs are the bit suffering most. The weakness and exhaustion I feel in them is like nothing I’ve ever experienced.

So I think the Doctor ordered lots of chilling out over the next few weeks, sleeping when I need and generally just taking it slowly.

Even though I do feel awful though, they can’t stop me smiling!

Jelly Legs and THE RASH

Last night I had a really restless sleep. I know, serves me right for being so cocky about Tuesday night doesn’t it! I was between breaking out in hot sweats and then going freezing all night. My breathing has been a bit shallow too which probably didn’t help either. So I ended up giving in and doing 10 minutes of so on a nebuliser. Must remember that I’m not at home suffering through this. I’m in hospital where they can help! The post nebuliser shakes are awful though. Just weakness like you’d never believe possible.

Feeling sorry for myself this morning

In other news, I no longer need my blood sugar levels testing as I’m no longer on the steroids so that nice alarm clock has gone.

I woke up with THE RASH this morning but that calmed down with my anti-histamines. It’s resurfaced again but I’m going for the “resist the scratch” method of medicating and so far so good.

Nebuliser and a real flush!

On top of all of that I was feeling epically sorry for myself this morning as I learned about “steroid crash”. I couldn’t bloody stop crying could I?

Oh and we can chuck some heartburn in for good measure, yeah?

Ahahh well. We go on! One more infusion to go.

Oddly the time has been flying. I’ve had a steady flow of visitors who have all come bearing food and something to talk about other than infusions and whether I’ve opened my bowels today (no joke, they ask about this probably close to 5 times a day!)

We can only laugh+

Three done, two to go…

I’m currently tucking into my favourite meal of the day! 9.30pm tea and toast (obviously accompanied by a blood pressure test and the rest of my tablets!)

Today has been a nice day. I woke up a very happy patient after successfully dropping off to sleep at 10.30 last night and only waking up at 6.15 in time for THAT alarm clock.

Kath has visited today with trashy mags, chocolate and more cordial (I’m getting through it at a ridiculous rate).

Fortunately as I needed a new cannular, she also arrived with a hand for me to crush! As it happened, the nurse on duty, Gincy, was lovely and really quite gentle.

Infusion started earlier again today – at about 1pm so we’re slowly moving forwards with it which is good as we need it nice and early for Friday so I can be discharged at a reasonable time.

After my infusion had finished I received another visitor in the form of Ste, a work colleague and friend for around 10 years. He’s just got back from his dream holiday in Sweden and Denmark so was fab to talk about that, and something other than my blood pressure!

Mostly today has been uneventful though. A little bit of chest tightness but not bad enough fo a nebuliser and I can report that my bladder is stronger with only about 47 trips to the bathroom today!

Tomorrow I stop the steroids. It will be nice for the taste to go, but with the lack of steroids comes a horrendous whole body rash in the vast majority of people!

Alarm clocks are overrated anyway!

Day 2 started for me at 4.53 am. Or at least that’s when I chose to wake up!

Which I can’t really grumble about since I dropped off at about 11 ish. In a strange bed, sweating like mad with Christ knows what pumping through my system, 6 hours is a good enough achievement for me!

I woke up at around 2 am with my cannulated arm in some serious pain, but just think it was the position of it. I hadn’t kept my arm particularly straight so bending it, right at the point of cannulation wasn’t doing me any favours. A change of its resting place seemed to sort it right out though.

I saw the early rise an opportunity to take advantage of the time difference and spent some time texting my sister who’s in New Zealand. Before I knew it, it was 6.15 and I was ready to drop off again. Unfortunately the night nurse had other ideas and appeared at my bed to give me the greatest wake up call of all time. A blood sugar test which basically feels like you’ve stapled your finger to the table! Never mind. Alarm clocks are for losers anyway.

I text Dave at roughly 9 am after I’d showered, got dressed and eaten breakfast. I didn’t get a response but he did walk through the door at 10am which was a nice surprise.

He’ll claim he’s sick of selfies but really he was upset after being told that he’s an infection risk, and to get off my bed.!

The rest of the day has passed in a bit of a boring blur to be honest. My second lot of tablets made my blood pressure drop so I went really faint. I eventually started infusion at 2pm. The delay happened as I needed to wait 22 hours before I could go again.

Half way point!

I had a face time with mum and dad a little earlier on which was nice. (Mum was showing off her desperado, whilst I was still ploughing through my mammoth effort of water. I’ve got through almost 4 litres today plus a couple of glasses of orange juice and a coffee. On the plus side, toilet trips are at about 87 now so that’s a definite improvement!)

I’m feeling mostly good though except tiredness has hit but can’t drop off yet as I still have another couple of hours of observations to go. My temperature has just started to spike in the last half hour too so they’re keeping a close eye on me.

All in all, a boring day. But as my mum always says, “boring’s good!”