Well, I’m currently considering my medication options…
Copaxone is the front runner at the moment. Mainly because the other meds available have unpalatable side effects for not much gain, it seems. They might repress the immune system too much as well. I don’t think killing off all my white cells is an option when I have two small kids and a wife who’s a teacher all bringing the world’s germs into the house.
I’m waiting to hear from my neurologist to find out what might be available to me. I had an MRI scan last night to help inform that.
A colleague has been accepted on the hookworm trial, which sounds very interesting, but she is treated at another hospital.
I had a meeting with my neurologist a week or two ago to discuss the whole matter. He seemed to be dismissive of the beta interferon blues and said it was the injecting/flu-like side effects blues instead.
I’m not so sure. Apart from some achey joints once and uncontrollable shivering twice, I’ve never really felt flu-ey. I’ve only ever felt MS-ey.
I allowed myself an inward smile as he described how copaxone might leave it’s mark on my body: “divots like a poorly maintained golf course.”
Now I know where he spends his weekends.
10 thoughts on “Divots”
Divots on a poorly maintained golf course? Charming. They have divots at beautifully maintained courses too, you know…. I inject Avonex, using a long needle into my thigh, and lately I’ve been feeling the hole deep in the muscle for most of the rest of the week as I exercise. I’m sure I never used to. I don’t generally feel flu-like symptoms from my injection, but most of the day afterwards, I feel generally fatigued: I wake up feeling like I”m being pushed back into the mattress, and this week, I had distinct brain fog until lunchtime, which is a most unwelcome development. Some weeks I really dread the injection too. It’s not really all that big a deal, but it dominates the day I do it and I feel it all the day afterwards. That’s quite a big slab of your week, really.
Anyway. Hookworms, eh? What hospital is that? I’m at QMC, but my MS is pretty stable and my visits are really pretty short and infrequent (touch wood). I’ll never know if the Avonex is making a difference, but whilst I’m doing well, why change?
I’m treated at Sheffield, but my colleague is treated in Derby as an offshoot of Notts.
Sounds like an interesting and promising trial. I have details that I can email to you, or it might be worth asking your nurse/neuro about.
Sorry,what I meant was the hookworm trial is taking place at QMC.
Have you considered Rebif? Same chemically as Avonex but with a smaller needle. Three times a week into fat rather than muscle.
DIVOTS. Another word added to my vocabulary. Better yet, I (still) don’t have any divots (nice sound, sort of solid and crunchy) after two years. Win win. Ok, no more minis, but the world should probably give silent thanks for that.
Seriously, if you do decide on copaxone, let me know and I can expand on the highs and lows. The best bit is the reduction in relapses from two/three per year to one per year. Better than it said on the tin. Could be the weather, could be copaxone. Hard to say, but assuming it’s the latter, the minuscule grind of a daily injection has been a minuscule (nice sound, soft and malleable) price to pay. So Go Co! Enough already. The sun is shining. In Leeds. Again.
Hi. Copaxone is probably my second choice. I’ve just had the neurologist letter and I might hold out to see if Tecfidera gets NICE approval later this year. What I do know is that it feels good to be drug free. At least for the moment. 🙂
On both counts.
Hi Dave – the reasons I chose Avonex are that it’s once a week, it doesn’t need to be kept in the fridge and I’m not scared of the needle. I’ve not had a major relapse – touch wood, of course – so there’s not much reason to change. I spiked a vein this evening, but generally I tolerate it pretty well. I’m also lucky to have QMC really. My younger brother is in Northampton and gets nowhere near the same level of treatment (he chose his drug, and they then put him in the hands of the drug company directly!) QMC is a centre of research and expertise in MS, although as my neurologist said to me, you wouldn’t want to have epilepsy here as all the funding goes into MS…..
Actually, now I think of it, I remember reading that my (old) neurologist, a teaching professor who passed me off as soon as I stopped being “interesting” (due to my lack of traditional presenting symptoms – something quickly cleared up by the lumbar puncture they eventually gave me) was running the hookworm trial. It’s an interesting idea and apparently the results are good. Better than a tablet that *might* give you a brain tumour, eh?
I just happened upon your blog by following the ‘neurologist’ link on my own blog. I was on Copaxone for about 7 years, but it stopped working for me. I tried another drug, but it was pulled off the market. Then, I went on Fingolimod, at the very beginning of the trial. I’m still on it, and it seems to be keeping me fairly stable. It is now called Gilenia.
I am the fifth member of my immediate family to be diagnosed with MS. I live in California USA, but am actually a transplanted Canadian.