Tag Archives: Lemtrada

How Not To Convalesce

illnessTime off to recover after Campath is a tricky thing.

Viewed in a certain light, it’s an excellent chance to slow down, take stock and make the most of the enforced sofa-rest, cushioned by a pile of books, a stash of chocolate and box sets.

In normal life however, without my very own Mr Darcy, the washing piles up, The Teenager has started his A Levels, the cat insists on bringing home an endless parade of headless mice and Ocado have emailed, imploring me to book my Christmas Delivery Slot, NOW.

In between bouts of complete and utter exhaustion, I’m battling to keep the show on the road. Plus I’m trying to think laterally and use the time off not only to rest but also to get ahead, i.e. work my way through the entire University reading list for next term.

I had all the books delivered, settled down, unwrapped a bar of Green & Black’s and prepared to be inspired and transported to wondrous new worlds.

Bad idea. I checked the syllabus. I checked the books. I emailed the tutor. ‘New and Experimental Writing’. Let’s just say, I have no idea what Gertrude Stein was taking when she wrote ‘Blood on the Dining-Room Floor’.

However, I ploughed through, ticked her off my list and moved on to the next one. Excellent. Somehow, I have moved into a Poorly Routine. I get up early when I have most energy, do something outside the house, get back by lunch then snooze through the entire afternoon. Then, I wake up, cook dinner, snuggle under my blanket again and wait for bedtime. It’s been working. For a while.

Two days ago, same routine. I got up early. Then fell on the floor.

Oh. Painful doesn’t begin to describe it. I was in agony. I could barely walk and somehow made it downstairs through a combination of swearing, clinging on to the handrail and thumping. By some bizarre coincidence, I had booked in to see the chiropractor, more for The Teenager than for me (scrums, head-locks, dodgy balls).

Long story short, my psoas muscle is in spasm. The pain goes through my pelvis and groin and out through my lower back. Walking is excruciating. According to the chiropractor, it’s all due to my sudden inactivity. Lol.

When I told my MS nurse I planned to return to work ten days after Campath, she laughed, then said, ‘no you’re not’. Ok then. Quick call to The Boss to explain the situation. His reply? ‘Didn’t notice you were off, Half-Shift. Or should that be Sick-Note?’

Charming.

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Ding Dong – Campath, Round Three …

campathMy third course of Campath (Alemtuzumab) is over and I am now back home from hospital. Yay!

The last three days have been a humbling, bonkers, strange experience. Third time around, you kind of know what to expect. And yet, I didn’t. Not really.

When I checked in on Monday morning, I felt like an Experienced Patient as I was shown to my bed. I unpacked my two pillows (essential), my blankie (a must-have), a selection of healthy snacks (mostly left uneaten once the steroids kicked in), a pile of paperbacks (overly ambitious), two towels, an array of miniature toiletries and a pen and notepad. Sorted.

The first surprise was being sent for an MRI before the first infusion. Ah. Right. Didn’t see that one coming. No time to go through my deep-breathing-yogic-anti-claustrophobia exercises, so I happily accepted half a Diazepam.

I therefore floated down in the lift, through the MRI waiting room and gently bobbed towards the hard plastic tray, humming to myself. Then afterwards, floated back up again, ready to be hooked up for the first lot of steroids and then, after being flushed through (really), the Campath.

So far, so good. Then, the same thing happened as before; that all-consuming, incredibly painful, every nerve ending on fire sensation, when the Campath first hits your system. I crawled into a ball and held my hand out for anti-nausea tablets and painkillers, whimpering ‘this too shall pass‘ to myself.

It passed. I ate a lot, read not a lot and dozed on and off. Luckily I had a steady stream of visitors who kept my chin up and brought me even more carb-laden snacks to feast upon. At the end of the first day, I was flushed out once more with saline and unhooked. It was 7.30 pm. Gah.

The second day was pretty much the same, although without the painful Campath-Hit thank goodness, but then the steroids did their job and kicked in. So I spent the second night wandering the corridors, eating toast with a nurse at 4am and offering to help clean some tables. I had a crazy amount of energy and had already packed and unpacked my bag twice.

This morning, after two hours sleep, I went bleary-eyed to the hospital Starbucks before my infusion and started hallucinating. I could have sworn I saw The Boss moving determinedly towards Starbucks at exactly the same pace as me. I stopped and stared. The vision stopped and stared. I waved. It waved. Gah. It really was my boss. He’d done a pit-stop to buy me a coffee and muffin before heading to Screwfix. As you do. It was lovely and we had a good old catch up, slurping away on our lattes, just as if I was back in work.

Third infusion and I realised, not just how lucky I am to have access to such an incredible treatment, but that I no longer have that same level of fear. If that makes sense. The first two rounds, I was fearful of the future, of everything. Now, I feel much more in control. Which is odd as it is my re-activated MS which sent me back here.

Anyway, now I am home and I have used up the rest of the steroid energy by sorting the house out, ready for the inevitable crash.

Tomorrow is another day. But at least the fridge is stocked, the bins are emptied and I have a huge pile of paperbacks to get through. Result.

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A NICE Setback

AlemtuzumabLast week NICE (The National Institute for Health and Care Excellence) gave their initial verdict on Alemtuzumab (Lemtrada).

They are unconvinced there is enough evidence that it will be ‘cost effective’ for the NHS to offer as a treatment for MS.

What this means is that although it is licensed as a safe and effective medicine for people with MS in the UK (and neurologists can prescribe it), without NICE approval, the NHS is not legally obliged to prescribe it to anyone who could benefit.

On the day I was diagnosed, apart from hearing that I had rapidly-evolving, or highly active MS, all I remember my neurologist saying was that if I had Alemtuzumab, it could potentially halt the disease progression for up to ten years.

At the time, I was having relapse after relapse, each one leaving me weaker than before. I was a mess, physically and mentally. My son was 12 and I feared for both our futures.

And having grown up being aware of my dad’s accelerated MS deterioration and early death from a secondary infection (he was 35), my mind was already made up. I signed up for two infusions, a year apart. I was incredibly fortunate to be in the right place at the right time.

So what’s my verdict? Alemtuzumab has been life-changing. It really did halt my MS in its tracks. I might still have the same symptoms I had before the treatment, but there has been absolutely no progression. No relapses. I still have good days and bad, but I know with certainty that good days will follow the bad.

Before Alemtuzumab, I was never in remission. Life was an endless string of relapses. Since the treatment, I have had the chance to pick up the pieces of my life.

And as for cost-effectiveness, what price a life? Apart from anything else, I now no longer need to contact the MS team on a regular basis. There are no trips to the relapse clinic, no steroids. But most importantly, I can be a real mother again. My son no longer lives in fear and I have the energy (mostly) to be there for him.

(The MS Society will be campaigning for NICE to overturn their decision and a public consultation is open until 9th January 2014)

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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.

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