Fighting for Fingolimod (Gilenya)

Having MS and being needle phobic is not a good mix. I’m not sure where my hatred of needles came from but its big, huge, I can NOT do needles. It’s not about the pain as most nurses seem to think, I know its only going to be a ‘small scratch’ which you can’t really feel and doesn’t actually hurt. What I don’t like is actually having something inside my veins, I can’t even cope with the thought of a needle breaking the skin and being inside me, bleugh. [Even typing this is making me a little queazy. Seriously, I feel a bit sick now... deep breaths...]

For the last couple of years my neurologists have been trying to get me onto medication to help manage my MS. As theres no cure they like to give you medication to try to reduce the amount and severity of relapses which sounds great, especially as mine is quite active so initially I was on board, I’d love some drugs, thank you. Then they tell you what kind of drugs they are, not a little pill I can pop each day, nothing that simple but varying kinds of drug options all including needles. I could choose to have drugs once a month via IV drip at hospital or inject MYSELF drugs everyday or three times a week. Seriously, inject myself??! How is a needle phobic person ever supposed to do this?! So initially I said no to these options as how was I ever supposed to make injecting myself part of my everyday routine? I remained very firm in my decision until I had another relapse. It was only when I was at rock bottom, in pain, throwing up, that I found myself seriously considering injecting myself as I hadn’t really been left with any other option, I would literally do anything to reduce the chance of this happening again. 

My neurologist was obviously very pleased that I’d come round and was willing to try the three-weekly injections but unfortunately this little chapter of my life was very short lived. What they don’t tell you is that the injections are going to be worse than any other injections you’ve ever had, that they will be more painful than you could ever imagine them to be, that they will leave you bruised and in pain for a considerable amount of time after the needle has been taken out. Oh and that the one main side effect is ‘flu-like symptoms’. Basically the whole time you are on this drug you will feel like you’ve got the flu. At least if you’ve actually got the flu you can take some time off work, try going to work every day for six months with flu. I’m sure some people do get on alright with this drug, I am well aware that I’m a bit of a wuss but I just couldn’t cope on it. I think the last straw, the day I decided I was giving up was when one of the needles got stuck in my leg. Bleugh. 

So I was back to battling the MS on my own, no help. Or so I thought. Earlier this year NICE (British medical people) finally agreed the use of a new pill form of MS medication in England (Scotland apparently don’t want it). Yes a PILL! No more needles! Although obviously being a new drug this pill comes at quite a hefty cost. You need to take the pills daily at a cost of £40/day. [Eek £40/day!] The feeling of excitement and relief was quickly replaced by the feeling that I’d have a fight on my hands. 

The NHS has a couple of criteria for getting your hands on these pills - 1. that you’ve tried one of the injection versions unsuccessfully for a year, 2. that your MS is ‘very active’. Unfortunately I obviously don’t fit into category 1. and I am just learning that proving your MS is very active seems to be the same as ‘how longs a piece of string’. My neurologist is keen for me to start on Fingolimod/Gilenya (the new pill), she just has to submit my case to the Primary Care Trust (PCT) for them to agree the funding...so my fight has begun. The MS nurses are busy collating my records to create a good enough case for Fingolimod and I think all I can do is pray. Pray that everything I’ve been through is recorded accurately somewhere, pray that the PCT look kindly on me, pray that the NHS works quickly this time. Hopefully this fight won’t be too hard.