Sunday, 14 October 2012

Relapse Schmelapse.

My lack of updating in this blog just goes to demonstrate just how skewed a picture of a treatment can be when taking user reported experience - with people much more likely to be vocal on a subject when it is not working. I get surprised when the MS nurse says to me that they would not expect me to have relapses on tysabri, because after all, it is not a cure. However she did say that of the 30 people currently on the treatment at Addenbrookes hospital, none have ever had a relapse on the treatment - until this year when two people did who had been on it since it came out. This is a very different picture of the drug than the one that you build from googling and reading diaries and trawling forums, because if it is going well, who wants to keep going back to say 'it's going well still thanks'. Not many - most want to forget about MS and get on with their lives save for the four-weekly trip to be infused. 

That is not to say that this update is because tysabri is no longer working for me - it is. But I might have had a small relapse last month. I went to my last infusion (number 7, number 8 is tomorrow) and reported having experienced a re-occurrence of certain symptoms, namely those of bladder and bowel disturbance along with a new experience of blurred vision in my left eye. The MS nurse said she would hedge her bets it was a urine infection, but that if I tested negative for that it could well be a small amount of new MS activity. It was an odd feeling to be sitting in a room with other people on drips and have a nurse report that 'everything was okay with the sample' with a distinct tone of disappointment and sympathy, instead of the usual cheery tone that would accompany the delivery of such news. I didn't see the MS nurse again after the negative urine sample but she said she would 'note it in my notes' and I guess that is all there is to it really. It isn't bad enough to want or need steroids, and I definitely don't want them to take me off tysabri, so when new symptoms appeared this month I thought it best to keep quiet about it. After all, if this is a relapse, it is much milder than any pre tysabri relapses, but I don't know if the NHS are willing to keep someone on a drug that costs them 30k a year if it isn't 100%  doing 'what it says on the tin'. Nothing anyone has said has given me that impression, at least not in relation to MS and tysabri, it's just my own personal concern based on other decisions NICE and the NHS and PCTs take when it comes to things being 'financially viable'. 

So do I report to the MS nurse tomorrow about the numb tongue I had for half of this month? Or the three numb toes on each foot (although to be fair to MS I think that was from my stupidly brazen attempt at wearing heels for a night out.)

I still like tysabri even if this is a relapse, I don't really care in regards to the tysabri. It makes me hate MS all the more for not ever thoroughly pissing off, but that I knew that anyway.

2 comments:

  1. Tell. They need our input. That is a powerful drug.

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  2. Completely understand your dilemma. I've been on Tysabri for almost a year now, and I started feeling what I think is a mini-relapse at the beginning of October. I hate to mention the minor vision and coordination changes at my infusions for fear of not receiving the Tysabri that day. These symptoms are still far better than they were prior to starting the Tysabri, after all.

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