helpers

Choosing not to take any disease modifying drugs I wasn’t seen as needing any help which is a pretty smart way for the NHS not to waste money doing unnecessary things – no need for appointments to be made to discuss dealing with side effects until the patient takes the drug she’s been told is the only treatment option. I wasn’t aware of just how much support there is on offer. If you can get in to see an ms nurse in your area do it, they’re great.

I first saw MF in 06 when i’d been eligible for a couple of years and was now considering going on one of the CRABs (Copaxone, Rebif, Avonex & Betaseron)

MF took me through how the options differed, what the ‘efficacy’ for each was, what i could expect from injection site reactions and the rest of the long list of contraindications for these therapies. I wasn’t convinced. It was the first time I’d seriously contemplated a risk/reward analysis. Very thankfully, my disease appeared to be taking a gentle stroll through my brain and spinal cord rather than a hell for leather sprint. Thankfully there were only a few warmup jogs along the way:     

I lost the ability to move half my face. Wearing an eye patch that summer to cover the one static, staring eye almost made up for the accompanying dribbling. Argh, I liked being a pirate!

A few years later, I picked up freshers’ flu when i went back to university. I  woke one morning  and not knowing which way was up promptly fell out of bed (a feat I’d never before believed possible) this lasted less than a week but seemed to mark the end of a relapse/remitting disease course for me.

I still have left side weakness which gets worse with heat, stress, exertion or fatigue (the wear and tear of daily life in other words) the vertigo bit (kind of like ‘roomspin’ at the end of a really good night) seems to be stopping by a few times a day. Luckily (in a slightly perverse way) now that my symptoms are getting progressively worse the CRABs are not going to have an effect rather than it being merely about %60 unlikely.

A review came out last week from another governmental health acronym that had analysed the efficacy and value of the CRABs. They had decided that the NHS should stop paying the 50 or so million/year prescription bill for the 'modifiers' as ms patients' disease progress appeared (averaged across thousands of patients) unchanged. I appreciate that they provide light in a very dark tunnel for some who endure multiple relapses/year. Being able to reduce that number even by a third is a good news story. MS nurses do fantastic, real, visible good whatever sort of journey your ms takes through you and, on the whole, don’t leave nasty injection site rashes!

If ms patients getting more facetime with ms nurses is the result of the NHS reducing their annual prescription charge bill (comfortably more than £10,000 per person per year for these drugs which have been shown to be not worth buying then the ms community are getting a great deal as we enter into the age of austerity.