Tag Archives: Alemtuzumab

Aug 28 2013
8 Comments
Symptoms and Treatment

Last Year A Neuro Saved My Life

last year a neuro saved my lifeI’ve had quite a few emails and comments asking about the Campath (Alemtuzumab) treatment I had and how it works.

It is an experimental drug treatment (originally licensed for leukaemia and in organ transplantation) for rapidly-evolving or highly-active relapsing remitting MS and acts by suppressing the immune system and killing T-cells which are involved in the MS immune system response.

It’s a bit like re-booting a computer – after the immune system is taken down, it builds back up again with T-cells that don’t destroy myelin.

Before I had this treatment, I was having relapse after relapse with barely any breathing space in between. My life and health were on a downward spiral and I was struggling to hold myself and my little family together. I had a five day infusion last year and a three day one this year and hopefully, that’s it.

Campath has given me my life back. I still have most of the same symptoms I had before, but the baseline is much lower and as I haven’t had a relapse since last year, there’s been no progression in my MS. It’s as if I have been handed a miracle.

It’s not without side-effects, as in any serious medication – the possibility of an overactive or underactive thyroid gland in around a third of people (which can be treated with lifelong thyroid medication) and the risk of idiopathic thrombocytopenic purpura (ITP), a blood clotting disorder, in 1-3% of people, which is why anyone having Campath must have monthly blood tests for five years after the treatment.

Genzyme, the manufacturer of Campath, submitted it for licensing in Europe last year. If a licence is granted, NICE (National Institute for Health and Clinical Excellence) will appraise the drug, determining whether the cost of treatment is approved for the NHS. There is a fear the company will price the drug out of reach of the NHS.

Judging from my own experience, I can only fervently wish that anyone eligible for the treatment receives it. Financially, I am far less a drain on NHS resources now that my health has stabilised. But more importantly, I can face the future with more hope.

(Some of this information comes from the MS Trust’s excellent fact sheet –  read more here)

p.s. after today, I’m back to blogging every other day – I just really wanted to publish this post and reply to people who had asked about it.

Tagged , , , , , ,
Jul 29 2013
6 Comments
Symptoms and Treatment

Sofa, So Good

couch potato 2The good news is, the steroids I took alongside Campath have left my system.

The bad news is, my sofa is beginning to take on a Stumbling-shaped dent, so much so that if the cat dares to jump onto it when I’m not there, she slides into the dip in the middle. Which is quite funny, if, like me, you don’t get out much.

With the steroids gone, at least I sleep through the night and no longer wake up at 2 am with a burning desire to polish the skirting boards or rearrange my herbs and spices into alphabetical order. All I’m left with now is overwhelming fatigue, but as an experienced MSer, that’s second nature. If I had to take a test on managing fatigue, I’d pass with an A plus and get a shiny sticker.

The Teenager is back from London. The washing machine is on, there’s thick clouds of Lynx in the bathroom, food is disappearing from the fridge at an alarming rate and I’m tripping over his size 12 trainers. All back to normal.

My plan for this week is a simple one. Sleep, watch telly, read and repeat. The aim is to a)recover completely and b)bore myself so silly that I’ll be ready for world domination at the end of it. Or something similar.

My sofa will be my command centre. I have my tv listings magazine, the land line, my mobile, the remote control, a selection of hand creams in case I feel like doing something energetic. A book, a pile of magazines, my duvet, the cat, a bag of sweets (or three), and a brochure for the local arts centre. I might not be able to go just yet, but I will absorb some culture by osmosis.

Choice of clothing is also very important. Nothing too tight fitting. The aim is to be comfortable, but also, when I have visitors, I want to look floaty and serene. No slippers (trip hazard and, let’s face it, a touch naff). Hair will be washed, as I don’t really want the mad woman in the attic look.

It’s a tiring business, being poorly. Actually, it could be my full time job. Well, at least for a week. After that, I will be back to my normal self. Lazing on the sofa, eating sweets, etc…..

Tagged , , , , , ,
Jul 27 2013
12 Comments
Symptoms and Treatment

Weak As A Kitten

weak as a kittenCompared to last year’s Campath infusion, I am a whole lot more tired this time around.

Mind you, ‘tired’ doesn’t even begin to describe it – that’d be a bit like saying you’re a tad sleepy when in fact you’ve been poleaxed by MS fatigue. Utterly, thoroughly, totally exhausted would be more apt. Drained of energy, flat battery, squashed, deflated.

Since I got back from hospital on Wednesday afternoon, I have wobbled unsteadily between my sofa, my bed, the fridge and microwave. Right now, these are the four cornerstones of my daily life, with regular medication punctuating the long hours in between. Alongside all my usual pills, I need to take anti-histamines four times a day for a week and anti-virals twice a day for a month. If I had the energy to jump up and down, I’d rattle.

I feel nauseous and spaced out. Thoughts float through my mind on fluffy white clouds and float back out again. The world is either moving a second too slow or a second too fast. I can’t work out which. Everything is slightly fuzzy round the edges.

I have little five-minute pockets of energy,when I raise myself from the sofa and slowly pinball around the house finding little jobs to do, just so I feel I’m doing something. Only problem is, I forget halfway through what I was meant to be doing. I stand for minutes, staring at a pair of socks in my hands. What am I supposed to do with them? Or, why am I holding an empty toilet roll?

The steroids don’t seem to have left my system quite yet either, so I wake up in the middle of the night and still have a ravenous appetite. I’m like a locust, stripping food cupboards bare. Half a packet of digestives, circa last year? Yes please. Two bits of dried apricot stuck together? Nom nom.

All this to one side though, I am thankful that at least I know I will feel better very soon, unlike a relapse when it’s anyone’s guess. There is a definite end in sight.

Tagged , , , , ,
Jul 25 2013
55 Comments
Symptoms and Treatment

Campath 2, Multiple Sclerosis 0

fighting back against MSI’m back home from hospital and reunited with my sofa after my second course of Campath.

Having a combination of steroids and Campath over three days has left me exhausted but with a brain that refuses to sleep, so I’m not only a vampire with the continuing heat we’re having, but a shuffling, glazed-eyed zombie to boot.

What makes it all worth it though is that I have gone from having relapse after relapse to not having had a single one since my first course last summer. I still have the same symptoms, but there has been no progression – a bit like being frozen in time for a while, giving me breathing space to get my life back into some sort of order.

The hospital stay was brilliant, thanks to amazing staff, superb care and friendly fellow-inmates. One brave patient a few beds down from me let me test drive her swish mobility scooter one evening. Making sure I had the dial set to ‘tortoise’ speed rather than ‘hare’, I trundled up the corridor, executed a rather neat three-point-turn and reverse parked the scooter next to her bed again to a modest round of applause. After being hooked up to an infusion for most of the day, the freedom was exhilarating.

The hospital food arrived regular as clockwork and was, well, let’s just say, designed to be eaten by people with only a few, if any, teeth left. If I’d been given a straw rather than a knife and fork, I wouldn’t have been surprised. But steroids had given me a ravenous appetite and I ate it all, then ate all the food my mum brought me in afterwards, then woke up starving in the middle of the night and rummaged around in my bedside drawer for biscuits I had stashed away.

Aside from the actual treatment, probably the best thing about the last three days was being in an environment where MS was normal, and nowhere near the most serious illness being treated. It was a relief to chat openly to other patients with no need to explain anything. I think the steroids must have given me not only an uncontrollable appetite, but a bit of a motormouth too. One patient’s regular visitor quipped, ‘blimey, it’s awfully quiet in here when that Scottish girl reads her book…..’

Tagged , , , , , , ,
Jul 22 2013
35 Comments
Symptoms and Treatment

Wish Me Luck As You Wave Me Goodbye….

lucky catI’m off to hospital today for my second Campath (Alemtuzumab) infusion and have spent the weekend preparing myself (read more about the treatment HERE). The Teenager’s in London, the house is quiet and my bag is packed.

This year, I’m taking no chances. The first thing to go in the bag were two soft and squishy pillows. Last time around, one of the nurses hunted high and low to provide me with an NHS pillow and came back holding a sad slab of foam.

I’ve also got my bags of dried fruit and nuts, a family-sized pack of Jelly Babies, some Belvita breakfast bars, a mini hand-held fan, a stack of books (which I probably won’t read) and some earplugs.

I’ve had a lovely, relaxing weekend. On Saturday, my boss took me out for a pre-Campath dinner at a local marina. This is in sharp contrast to last year’s Campath treatment, when I was working for a boss who would sack me for having MS just a few months later. There were no good wishes, no cards, no phone call to ask how I was doing. Thankfully, that’s all ancient history.

I held a Listeria Feast yesterday, eating all the foods I won’t be able to enjoy for three months – salami, sushi, coleslaw, fruit salad, raw carrots and a huge tub of soft serve ice cream. Also some camembert, which I don’t even like, but if I’m going to be denied it for three months, I was going to eat it for good measure (nope, still don’t like it).

Staying for three days on a neurology ward means that my days will be filled with answering questions from nervous-looking people booked in for lumbar punctures. Hmm, tricky one. If I lie and say it’s a breeze, they’ll quite possibly drag me out of bed and beat me up afterwards. If I tell the truth, based on my own horrific experience, they’ll run screaming from the ward before the needle’s even gone near them.

So, wish me luck. I’ll be back in the blogging seat again on Thursday. Just hoping I can still tweet from my hospital bed…

Tagged , , , ,
← Older posts
Newer posts →