Tag Archives: Campath

Never Never Land

fairy dustI have been living a dream.

The dream is simple – no more relapses. No more fear.

But as with all dreams, we wake up.

Campath. It has been a marvel.  I adore it. I embraced it in the hospital. It quite literally gave me my life back but with a proviso. My neurologist told me I could expect ten good years. Yet at 37, that seemed an eternity.

A couple of days ago I met  a wonderful woman who had double the number of infusions I had. Her story mirrored mine. Eight fabulous relapse-free years.

Now she is in a wheelchair.

I have slept badly. I jolt awake, feet twitching and burning, dark thoughts running through my mind unchecked. Believe me, I don’t fear a wheelchair. I fear the loss of control.

MS is weird. We have no idea what the future holds. Mine may have rainbows arcing over the next few years. Or it could be the opposite. Do many of us ‘wish’ we had an illness with a more predictable disease path?

So I kind of feel I am back to stage one. Two years ago, almost to the day, when I sat in my car, dreading the neurology meeting. I knew it would change my life. It did. And  it keeps on changing.

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Don’t Call Me, I’ll Call You…

Best FriendsI really have messed up.

I called a couple of friends over the last few days and without fail, they’ve said to me, ‘must dash!’.

I don’t blame them. I’m a terrible, awful friend.

I have been selfish, self-occupied and…..boring. I bore myself. So what hope do my friends have?

I love my friends but possibly I have called upon one too many favours. And what do they have in return? Nothing but a whingeing, boring peep, with MS her only conversation.

It wasn’t meant to be like this. I was supposed to be the living embodiment of ‘living well despite MS.’ So what happened?

Who knows. I think I am still the engaged, interested person I always was, but recent experience has shown me I really am not. Am I so used to MS now, it has become second nature? Is it me? Am I MS?

A depressing thought. But I guess not entirely surprising. I try to imagine myself if the roles were reversed. Could I be that patient, that understanding? For almost two years?

I love my friends. The thought of losing them is too terrible to bear. I have already lost so many since The Diagnosis.

I realised recently that I’m never invited out for lunch or coffee. Or, heaven forbid, a night out. I must have turned down so many invitations I’ve lost count. Friends have given up. ‘Nah, don’t bother asking Stumbling, she’ll only say no……’

I find myself in the position of calling friends and (begging just a little), ‘um. yeah, hi! Fancy getting together? Yeah, me! Um, ok, no worries……catch up soon, yeah (please)?’

Hmmm. My friends have been superstars. It’s me who is at fault. I. Am. Boring.

This is why I plan to take up the saxaphone this year. And why I have joined a friend’s book club (forget the first planned meeting, a disaster thanks to The Teenager).

To all the friends who have stuck by me, thank you.


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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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What Are The Chances?

scratchcardIt’s never going to be good news when your MS nurse phones up out of the blue and says, ‘can you talk?’

To cut a long, uncertain story short, it seems I may, just may, have developed thyroid problems since taking Campath.

It’s treatable, I’m not too worried and as always, the MS nurse was calm and reassuring. I took the risk, I knew the chances – a 10-30% possibility with Campath, and I have no regrets having had the opportunity to take it. It has given me my life back.

What’s frustrating is that I was pretty much signed off by my neurologist until next February and was finally beginning to put the uncertainty of living with MS behind me. Now there’s another round of blood tests on top of the monthly Campath one and I’ll have an appointment with yet another consultant, an endocrinologist this time. And what’s really, really annoying, is that I seem to have come up with the dodgy odds again.

Apparently there’s a 1 in 750 chance of developing MS in the first place. Not too bad. If you have a parent with MS as I did, there’s around a 1 in 100 chance. That’ll be me then. And now with the thyroid odds, I’m beginning to wonder if I’m ever so slightly jinxed.

On the flip side, I’m grateful a potential problem has been picked up so early, and at least I’m already learning to live with some of the symptoms as they’re remarkably similar to MS – fatigue, hand tremors, heat intolerance. I’m wondering though, if you have both MS and thyroid problems, does that mean you get twice the amount of fatigue? And hand tremors? I’m only asking as I’m beyond shattered right now and I broke my second-last glass a couple of days ago. I have now reluctantly invested in plastic ones. Still drop the blasted things though, but at least they bounce.

Anyway, with the odds stacked in my favour, I’m toying with the idea of taking up scratch cards as a hobby. Or bingo?

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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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