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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8 thoughts on “Last Year A Neuro Saved My Life

  1. Samantha Thompson says:

    This treatment sounds great. So glad you have it x Campath is easier to say than the Alem….)!!

    Can I ask about the highly-active RRMS, how did they know that? Sorry, still finding things out and I tend to ask questions!! I’m having my LP tomorrow and I wondered if they can tell more about how active it is from that.

    • stumbling in flats says:

      Hi Sam,
      I still can’t say it properly, don’t worry!
      From what I can understand, my second mri showed quite big changes from my previous one and the neuro told me I had a pretty aggressive form of RRMS. I think I had a lot more lesions than they were expecting on the second one, which would tally with the number of relapses I was having. Before that, I’d never heard of highly-active or rapidly-evolving RRMS. All very confusing!
      I don’t think you can tell from LP, just scans and medical history. Good luck with LP!
      I’ve never really written a lot about Campath before as I know it’s not available to everyone, but I had so many emails asking more about it. I think the more of us who know about it and the battle to get it offered to MSers the better? I just happened to be in the right place at the right time and I dread to think what my life would be like now if I didn’t have it 🙁

      • Samantha Thompson says:

        Oh my, I have just received my Open Door Newsletter and who should I find in there! Woo hoo, I will be reading later when I get some quiet time.

        • stumbling in flats says:

          Arrrrggghhh! Great article, terrible photo. I am honestly not that size in real life, lol (I blame the blouse, meh).
          Anyone who has an employment query can email Anna, the lovely lawyer who helped me with my case – just contact through the MS Trust.

  2. Thanks for the Campath post! It’s very interesting to learn about different treatment options, and I’m so happy you are stable! (Physically – hahaha)

    • stumbling in flats says:

      Hi Cranky!
      I’m very stable, I’ll have you know. Actually, you’re right! Yup, Campath is extremely exciting if it can stop the disease progression in MS. I was told it can do that for up to 10 years, which is why I signed up for it. If I can just get the Teenager into adulthood, I’ll be fine!

  3. Demyelinatingdan says:

    I fear that Genzyme’s dedication to recouping the money invested during the trial stages may price the medication out of the hands of our local primary care trusts.

    This is a problem when Governments allow profit making organisations to be involved in these research and subsequent trial processes.

    Don’t be greedy, Genzyme, this is our livelihoods at stake.

    • stumbling in flats says:

      I completely agree with you Dan.Also, there’s too much money to be made out of keeping people with MS on DMD’s, rather than Campath, which could potentially halt the progression for up to 10 years.
      Shocking politics behind it all.

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