Magical Alemtuzumab

The day I was diagnosed with MS, my neurologist told me that mine was the highly-active or rapidly-evolving sort. I had two choices. The usual disease modifying drugs or Alemtuzumab (Campath). It’s a drug used to treat leukaemia, and in laywoman’s terms, it strips out your immune system, killing the T-cells involved in the MS immune response.

There’s some pretty serious side-effects including a 1 in 3 chance of developing a thyroid problem, but it can halt the progression of MS for at least 10 years by reducing the number of relapses. A no-brainer for me – I was having relapse after relapse with barely time to catch my breath inbetween. It was like being thrown against a wall repeatedly. My body was battered and bruised, I couldn’t walk properly, I slept all the time and fell over a lot.

So, it was an easy choice and I know just how fortunate I was. I was lucky to be under a hospital which took part in the trials. It is still unlicensed for use with MS, but was given to me on a ‘compassionate basis’. All I wanted was to be able to see The Teenager off to university in a couple of years. I didn’t want him to be my carer, or to always be too tired to take him anywhere.

After five days in hospital, hooked ¬†up to an IV, pumped full of chemicals and steroids, I was back home without an immune system for the next few weeks. Now, four months on, a miracle has taken place. I still get tired but I don’t need to sleep the afternoon away, I haven’t fallen over, I can walk (stumble) far better than before and I just generally feel, well, normal(ish) again. I haven’t had a relapse…yet. Touch wood. Don’t walk on cracks on the pavement. I still have a whole bag of symptoms, just not all at once.

So why am I angry? Well, the makers of this wonder-drug have withdrawn it from market, in a bid to relaunch it as an MS-drug and will price it out the reach of most health authorities. Big Pharma strikes again…..

Read Sian’s brilliant blog for more information – she’s pretty angry too.

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