Tag Archives: Alemtuzumab

Jul 11 2015
4 Comments
Symptoms and Treatment

Fat, And Then Some

thyroidThere’s short straws. Then there’s short, fat straws.

The Alemtuzumab treatment I had for MS gave me odds of 1 in 3 that I would develop Grave’s Disease, a thyroid problem.

I was the 1.

At first, it was wonderful, as my loopy thyroid helped me shed pounds effortlessly. I was buoyed up with an incredible amount of energy (the Holy Grail for any MSer) and I sighed with sheer bliss as yet another pair of jeans were consigned to the growing Fat Pile, tucked away at the bottom of my wardrobe.

Enter the endocrinologist who took one look at my thyroid levels and immediately put a stop to my fun, effectively reversing then decelerating my over-active thyroid into a sluggish, bored, tired under-active thyroid.

I cried when I stepped on the scales. I snivelled when I rummaged around my Fat Pile. Every single day I gained a pound. I banished carbs and chocolate (gah) from my diet. I sipped green tea and swirled cinnamon sticks in my natural yoghurt.

I have a fairly physical job, so hoped against hope that this would offset the rapid weight gain. Nope. My Duracell-Bunny hyperactivity had morphed into slow-mo.

At my last meeting with the size-six endocrinologist, I’m not afraid to say I begged. I pleaded and put my case forward: the meds I was taking were of course sorting out the thyroid, but were ruining my life on two levels:

  • Relentless weight gain. I am now a blob of my former self.
  • Extreme lethargy and fatigue. Commonly known as, well, common MS symptoms, so I was having a double-whammy.

She had no mercy and told me I might be on them for a year. A year. At my current rate of weight-gain, I will be dressing in tents with holes cut in them for my head and arms.

It’s getting harder to keep going at work, as weight gain plus fatigue means it takes me hours to recover after just half a day in work. Never before has my nickname, ‘Half-Shift’ been more appropriate. My body and mind shut down at a certain point and I slump onto a pile of bricks, head in hands.

On the plus-side (lol), I am yet again radically over-hauling my diet in a desperate bit to put a stop to the pounds piling on even more than they already are. I have dusted off my kettle-bell. It’s still a door-stop, but I live in hope.

For now, I am experimenting with black clothes and dramatic scarves. Perhaps I should start wearing my heavy, black-rimmed reading glasses again, to draw attention away from my triple-choc muffin top.

And I will have insane pleasure in saying, ‘oh the fat? It’s my thyroid. Honest.’

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Jan 06 2014
16 Comments
Emotions

Banish That Guilt

guiltEvery New Year, we’re bombarded with articles telling us how to ‘eat guilt-free’ and ‘enjoy low-fat treats without the guilt’. This comes straight after the very same publications have told us to hang the guilt, it’s Christmas.

Guilt. It’s a strange old thing. I’ve been reading through all the emails I’ve had over the last year from my blog and the one theme that comes through very strongly is guilt.

You guys have shared with me your most challenging stories, the hell of limboland, the shock of diagnosis and your fears for your families and future.

And in addition, there are often the words, ‘I feel so guilty – my MS isn’t as bad as other people’s.’ Or, ‘do I have a right to feel so devastated when I’m still relatively healthy? It makes me feel guilty.’

I feel the same. My MS was pretty bad initially but my relapses have stopped since Alemtuzumab treatment (how long for, who knows?). I felt a huge sense of guilt – it still hasn’t been approved by NICE, so I was simply in the right hospital with the right neurologist at the right time. Most of us who would benefit from this treatment don’t have access to it. At one point I thought seriously about closing the blog as I didn’t feel I now had the right to talk about MS as ‘it wasn’t as bad as other people’s’.

Let’s backtrack though. How should we deal with this guilt? Refuse all disease modifying drugs so we can truly experience MS at it’s worst? Or if our symptoms are mild, should we ignore the fact we are still living with a degenerative, incurable illness and therefore deny ourselves access to support? No. MS is not a competition (although there are people out there who think it is ).

MS is individual and our life circumstances are unique to us. MS affects us all in different ways, physically, mentally, socially. Guilt, on the whole, is an unnecessary emotion. It brings nothing positive and holds us back from moving on.

This year, I am going to banish that guilt. Instead of feeling guilty, I am going to channel my energy into campaigning and raising the profile of MS. In 2012 when I started this blog, people from 31 countries had read it. In 2013 it was 108 countries. This blog might just be a drop in the ocean, but in my own little way I hope I can make a difference.

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Dec 07 2013
10 Comments
Symptoms and Treatment

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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Nov 01 2013
8 Comments
The Teenager

Proud? Oh, Yes.

The Teenager was on his way back from London in the aftermath of the storm on Monday.

It was touch and go whether he would get back on time and during the journey he sent me a long string of texts, keeping me updated minute by minute. Bless him;

Train not moving. Train moved for a minute. Train stopped. No idea where I am. Got off train. Got on another. What’s for tea?

His last text was more enigmatic – Brilliant news!!! Something amazing just happened!!

He refused to elaborate until he was safely back home, an hour late, but beaming from ear to ear. Finally, he said, ‘It was great, I was speaking to a medical student on the train and I was telling him all about MS and all about that funny treatment you had and how much better it had made you, and we had such a great conversation and I actually know an awful lot about MS, don’t I?’

Just like me, The Teenager has had a long way to go from shock to acceptance throughout the whole MS drama. He was 11 when it all started and I worried about the long-lasting impact witnessing a parent in rapidly declining health would have on him. I stood by helplessly as he cried in the bathroom or slammed his bedroom door in anger. He did not want to be consoled, he just wanted it all to stop.

At the recent MS Society awards ceremony in The Dorchester, he moved with ease through the crowd, chatting to anyone and everyone. He experienced a positive side to MS and realised that he was not alone in his new environment.

Thanks largely to Alemtuzumab treatment and a great support network, MS has not been as devastating for us as it could have been. If anything, having MS enter his life at a relatively young age has made The Teenager far more compassionate and acutely aware of the multifaceted issues surrounding disability.

However, he is still a teenager. I don’t confide my fears in him (why would I?), his life continues as normal as possible and although MS may have weakened me, I still retain my strength as a parent. And I am still more than able to nag him about the state of his bedroom, not doing his homework on time and not closing the fridge properly. Some things will never change…

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Sep 15 2013
28 Comments
Symptoms and Treatment

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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