Nothing About Us, Without Us?

The news came through a few weeks ago that the medicine I chose to tame my multiple sclerosis (MS) had been restricted by the European Medicine Agency.

Obviously, having had three courses of Lemtrada, I was concerned.

I read further.

22,000 of us have had the treatment. 39 strokes have been reported, often within hours of treatment. There are many other statistics I can’t make head nor tale of, as they are written up in medical lingo. In my experience, I had a horrendous flood of weakness after the first administration, then nothing. Just the usual tedium of being hooked up to a bag on a stick for several hours.

I was contacted by various people, worried that I hadn’t heard the news and I would drop dead fairly soon.

I didn’t die, but discovered that the overall risk of stroke after (Lemtrada) may not be statistically greater than stroke in the untreated multiple sclerosis population.’ When I decided to take Lemtrada, I knew the risk of Grave’s disease – which I had – leaving endocrinologists flummoxed as Lemtrada-induced Grave’s was a whole new ‘illness’.

So, I packed on weight. Gah. But, in the grand scheme of things, I would rather be fat (which I am) and happy than skinny and immobile.  I took the risk and it didn’t work out. It happens.

The temporary guidance advises that Lemtrada is only used on new patients after they have previously tried two other Disease Modifying Therapies. That just doesn’t happen with Lemtrada – it is a first line defence, for those of us who experience  a rapidly-cycling form of the illness. By the time a newly-diagnosed person has gone through two other treatments, they are no doubt not eligible for Lemtrada.

Within this whole confusing scenario, I wish the EMA had reached out and asked some us how Lemtrada had worked. But apparently their guidelines have not mentioned patient input.

So 22,000 of us have no voice.

This is completely unacceptable. Any form of medical restriction must involve the patients who have already taken the drug? Surely this is the first and foremost consideration?

It’s an oft-used phrase, ‘Nothing About Us, Without Us’,but when it comes to halting MS, we should be consulted.

Why wouldn’t we be?

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4 thoughts on “Nothing About Us, Without Us?

  1. Joan (Devon) says:

    My MS reared its ugly head at the end of 2006 and it was confirmed in 2007 just before we moved from Devon to Wales. From then until now I have never been offered any treatment whatsoever. I may not have taken them up on the offer, but having the choice would have been nice. The only medication I take (I think it’s for MS) is Baclofen. I have heard of Lemtrada, but that’s only because you’ve mentioned it and Bethy. Good luck with your findings.

    • stumbling in flats says:

      Thanks Joan! Bit of a worrying situation. And I’m really sorry you didn’t have the option of treatment.
      I think patient choice, whether we accept it or not, should be at the very front of MS treatment. Not a lot to ask!

  2. Chriistine Mountford says:

    I am a Lemtrada success story. I had two rounds across 2015/16 and I haven’t looked back since. I have a third round in ‘my bank’ for a time when’s day if I deem it necessary. At present I do t need it and I hope I won’t in the future. I’m glad my neurologist sat London’s Charing X listen to me, consult with me and never do anything without a thorough discussion about the pros and cons first. I have developed an underactive thyroid in the last year but thanks to the monthly blood tests carried out at my gp practice, the change was noted within a month of it happening and on the same day they received the blood results, I was in front of the emergency doctor being pr3scribed levothyroxine. Problem solved before my body had time to register any displeasure from the thyroid and it’s been managed perfectly well since. I’m very lucky that I have access to brilliant neutrons who work at the forefront of research and who regard me as a ‘colleague’ in the management of my condition and not as a patient. I think how well ms is managed is dependent on where you’re located. I’m horrified for the woman who commented she’s never had access to treatment in Wales. We should all have equal opportunity to equality of management for our wide ranging symptoms and above all should be encouraged to have our views heard equally.

    • stumbling in flats says:

      Fantastic comment – your neuro regards you as a colleague in the management of your condition! Brilliantly put.
      So glad to hear you’re thriving! X

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