May 25, 2013

Fampyra diaries, 2

So far the vertigo that forced me off Fampyra last time seems to not be present, thank heavens.
Is it helping? Well, I FEEL different. Swam on Friday and found it harder to swim but that's cos I was going a lot faster - normally it takes me a minute per lap, and Friday I had knocked that back to 45 seconds.
Significant improvement there, but it still feels like my body isn't quite right.
MS walk tomorrow. Apparently there's a 3 km route. With luck I'll make it all around in good time.

Vision still different than it used to be. I suspect either I am over my optic neuritis or just getting older - haha!
Might be time for another visit to the eye doc.

May 22, 2013

Fampyra diaries

I've recently been started for the second time on the MS drug Fampyra. It's been approved for use in people with Multiple Sclerosis to aid walking speed and ability.
I tried it back in January and had to stop it because of overwhelming vertigo  - I think there were a bunch of factors at play there, from recovery from a trip to Cuba to the flu, to a urinary tract infection (one of the known side effects of Fampyra, and unusual for me). Now that I've recovered from those things, I thought I'd give it another go.
It's not inexpensive. A monthly dose costs upwards of $600. My drug insurance doesn't cover it, though I can write it off on my taxes, I suppose. So it's gotta be good for me to continue it.
When I tried it last time, my walking dramatically improved. I could walk much further and faster and for a longer time - a significant change in all three parameters. But is it worth the money?
While the drug, a potassium channel blocker, is approved to help with walking, I am wondering if it will also have an effect on other functions affected by MS.
Here's what the MS Society of Canada has to say about the drug:

Biogen Idec Canada announced that FAMPYRA (fampridine sustained release tablets or fampridine SR) is now available for prescription in Canada. Health Canada approved
PrFAMPYRA™ on February 10, 2012 for the symptomatic improvement of walking in adults with multiple sclerosis (MS) with walking disability (EDSS 3.5-7). FAMPYRA is the first approved treatment for walking impairment in adults with MS.

Fampridine blocks tiny pores, or potassium channels, on the surface of nerve fibres, which may improve the conduction of nerve signals in along nerve fibres whose insulating myelin coating has been damaged by MS.

Common side effects of fampridine include urinary tract infection, difficulty sleeping, dizziness, headache, nausea, weakness, back pain, problems with balance, MS relapse, burning, tingling or itching of the skin, irritation of the nose and throat, constipation, indigestion, throat pain. The initial prescription should be for no more than 4 weeks, and assessment for improvement in walking should be carried out within that timeframe.

Please contact your physician for more information about treatment with Fampyra and the FAMPYRA In Motion™ program.

My excellent doctor here has seen improvement in cognition and sensation and urinary function and all that in her other patients as well, which makes a certain amount of sense since the effects are systemic and the conduction, if improved in walking nerves, should also be improved in other central nerve pathways. I've been having problems with my vision for a few months now - blurring and variability - and I am seriously hoping for some improvement. Plus I'd like to be able to walk well enough that I could lose some weight, thus making walking easier even if I'm off the drug.

I thought I'd keep track of things on my blog, in case anyone else is considering the drug. We all know that anecdotal reports don't = truth but maybe my experience will be of use to those of you wondering.

Today I went to the pool, as I do two to three times a week, and swam 32 laps. I can do up to 50 on a really good day but have been generally holding steady at 36 to 40. I felt good, but after two pills (last night and this morning), my body feels different. Meatier, somehow.
I'm somewhat dizzy, and I am having difficulty with typing but that's normal for me. Onwards ho!

May 20, 2013

New approach to improving treatment for MS and other conditions

New approach to improving treatment for MS and other conditions

Interesting piece on a drug that treats mitochondria and seems to have an effect on MS in mice.
Ever since I studied microbiology and cell functions in high school and college, I've been a fan of these wee powerhouses of the cell. Back then no one know what they or Golgi bodies did. It's exciting to learn, along with the rest of the world, what they are all about.

Maybe it'll turn out that that is where the solution to MS lies...