If you read my blog last week, you wont be surprised to hear that I've had a week of feeling sorry for myself, but I feel much better for it. I've decided to plan my future and I've made a few potentially life changing decisions. Nothing life changing (erm, hang on, you just said...), but I need to be prepared for the worst case scenario, just in case.
I've been reading a few Gilenya blogs this week. This one gets put on the MS-UK website as well as half a dozen others. The one's I read were from people in the States, and they've been on Gilenya for well over a year. A few have been on it for longer. Since it was a stage 3 trial drug, no less. It is quite common to be kept on a trial drug after the trial has finished.
The general consensus seems to be that there hasn't been life changing improvements, just minor ones AND their illness has stabilised. This is what exited me. I have been slowly deteriorating since I was diagnosed 7 years ago. We all want improvements, but I'll take no disease progression right now. It's important I find a drug that halts this seemingly relentless march towards progressive oblivion. Keep me at this level for a couple for a couple of years please?
I have tried other drugs. I was on Rebif for two and a half years. Can I call it by its brand name, or shall I simply call it Interferon? Well, it never done me any good, so I'm not giving Rebif any free bloody advertising. Oh, hang on...?
As my relapses were increasing in pace and severity despite the disease modifying drugs, I was deemed eligible for more aggressive medication. That's when I chose to go on Tysabri (Nataluzimab). I was tested for JC virus before my first infusion, and although it came back positive, I still opted to take the drug.
JC virus can be found in the blood of approximately 50% of the population of those tested. It is a harmless virus, provided it doesn't get into a nervous system of someone where there is little to no immune system. Left untouched, JC virus can mutate and become Progressive multifocal leukoencephalopathu (PML) - Of course I looked that up. I can't even say it, let alone spell it! Where was I? PML. Tysabri works by stopping your immune system from getting into your nervous system and attacking the myelin sheath that protects the nerves. You need to think long and hard about taking Tysabri if you're JC+.
I decided it was worth the risk, and I went on to have 30 monthly infusions before I came off Tysabri at the start of last year. I stopped taking it because my deterioration was picking up speed, I wasn't convinced it was still working and I felt that I needed to take a break from the drug and assess my situation. By the time I had been off Tysabri for three months, my Neuro informed me that in that time it would have completely 'washed' out of my body, so he asked if I would be interested in trying a new medicine that had just been re-licensed. I always keep up to date on research matters (Time to plug the MS Trust website) and I knew the new drug was a tablet and it was called FTY720, or Fingolimod, or Gilenya and this is where I'm at. Fingers crossed.
Happy Friday, all.
Dan
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