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Fingolimod, the new wonder-drug for MS?

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I have been on the phase III trials for FTY720 (aka Fingolimod) since Feb 13 2007. That’s nearly 16 months to the day.

The easiest way for me to gauge the change in my condition is not, as might be expected, the clinical tests like my score on the EDSS. That has dropped, from a 5.5 to a 4, which is quite remarkable in itself. But most noticable has been the change in day to day activities.

I started swimming at our local gym a little over a year ago. I remember the first couple of weeks well. I had to bring my orthopedic walker along and park it next the pool. My legs were very weak from lack of exercise  and it was only the strength in my arms that kept me going, initially. I could do 24 lengths, with a lot of resting in between. Those 24 lengths took me about an hour. Afterwards, my legs were like jelly and I battled to haul myself out of the pool. And when I say battled, I mean really battled. I would then grab my walker and painstakingly make my way to the girl’s locker room, get dressed and from there make my way out of the gym, leaning heavily on the walker. I remember one time I was trying to go too fast and next thing I knew, I was sprawled across the floor with people milling around to help me up.

This trend went on for quite a number of months, and was especially bad if the pool was heated past a certain point, or if I was having a relapse. I was starting to lose faith, because it seemed like I was fighting so hard to move forwards and gain a modicum of fitness but it just wasn’t happening.

After a gym session, in those early days, I would have extreme mobility fatigue, and just grew to accept the fact that on ‘gym days’ I would be pretty useless for the rest of the afternoon.

Fast forward to present day, after swimming three times a week for 13 months:

Today, I swam 48 lengths comfortably, virtually no resting in between. I haven’t used the walker at all since at least January, maybe even before. It doesn’t go to the gym with me anymore. After getting out the pool (with no hassles) I walked to the locker room without even holding on the railing, got dressed and walked out the gym with no problem. No mobility fatigue or ataxia. I then had a piping hot bath (huge no-no for me previously) and did get slight mobility fatigue, but not to the point where I couldn’t walk and it passed quickly.

If I look at it objectively like that, it really astounds me. I’m not even the same person I was a year ago! I pretty much blend in at the gym now.

My life in general is a lot easier. I can do things that I haven’t been able to in years. I can even use a skipping rope again, even though I can only manage 5 consecutive skips. It is still massive progress, as MS-ers are notorious for not being able to jump. (We’re like elephants 😉 )

When we go grocery shopping, I don’t get tired out after only navigating a few aisles. Nor am I contrained to hanging onto the shopping trolley for balance.

I’m not attributing all this purely to the Fingolimod, but I know it is playing a huge part. Obviously, the swimming itself is helping, as my legs are much stronger these days. I have recently noticed that I am able to push myself, to a degree, in the pool for a cardiovascular workout, where previously I had to stay well within my comfort zone, or else huge trouble. So I am getting fitter.

I am also being treated with Quantec therapy since July last year, which I believe is benefitting me quite significantly, too. The lines are a bit blurred as to what is helping me the most, but I was improving already before I started with the Quantec, while just on the fingolimod.

The fingolimod has not only reduced my relapses, but also taken the sting out of them. I can’t boast a 100% drop in relapse-rate like others on the trials, but what I can say, is that my MS has gone from being completely out of control, like a runaway train, to being manageable. At this stage, it is a huge, big deal in my life.

I wait with interest to see how I will be doing a year from now. I am so hugely grateful to be a part of these trials. I think these meds are going to make a big difference in a lot of people’s lives.

Written by Maggie

June 11, 2008 at 6:04 pm

Posted in Uncategorized

2 Responses

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  1. Wow what a lovely update I loved reading that.

    You are doing so so well, and wow I am impressed with your fitness… that’s amazing by ANY standards! Well done!

    Congrats on the good results, I hope they go from strength to strength!



    June 11, 2008 at 8:33 pm

  2. That is SO awesome. And yes…now that you mention it, things have changed SO much. Before when I saw you coming up the drive-way I would quickly get the boys to move everything and anything out of your way. Now, I just give it a quick glance but more to make sure the house doesn’t look too bad lol You are doing so much better. Must love that drug of yours 🙂

    It’s great that some people even have 100 % drop in relapse-rate. Sjoe.


    June 12, 2008 at 8:01 am

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