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Catch up (Fingolimod)

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Even though I’m so out of the blogging scene at the moment that I barely remember my login details, I thought I’d better update on how it’s going with my Fingolimod trials, like I said I would. So here goes:

On the 16th of March, I had an appointment with the trials doctor. Everything went fine. I had an ECG, which was fine. Gave blood (and I heard today that everything there is fine. No problem with my liver enzymes, which is a possible side-effect). I had my eyes tested, and no macular oedema, which is also a possible side-effect.

What I remember most about that trip, though, was the picturesque scenery. In particular, there was a beautiful field of sunflowers at one point, bordered by a magnificent clump of cosmos flowers. I was transfixed. I spent the night at my sister’s place, which was a lot of fun. On the way home next day (I got a lift with her and her fiancé) She pointed out the cutest thing to me, which I must have driven past a hundred times, but never noticed. It’s a lovely farmhouse, with a red, tiled roof, and white gutters. But the cute part is that right next to it, is a tiny replica, also with a red roof and white pseudo-gutters. It’s the dog-house! Charming. I’ll try and take a photo of it next time I go past it, and post it, lol.

We saw it today, but never had the camera with us. Damn.

Today (10 April) I had another appointment at the doctor’s. Just a short one. Blood test and disability scale check. Everything is looking good.

Unfortunately, I had a relapse during the last week of March which had to be treated. I noticed it first when I was playing the piano and my left hand started dragging and becoming very unco-ordinated. My legs were going numb from the knees down and I was having dizzy-spells. So yeah, I went for a 1gram dose of solu-medrol. Didn’t have the most delightful week following that, let me tell you. Y’all in blog-world can be glad you were spared that maudlin rubbish. Anyway, I am feeling better now, although not totally recovered. A bit worried about that, actually, as I opted for less cortisone than I should actually have taken, as recommended by the neurologist. It’s just that I take so much of the stuff, and I’m worried about long-term side-effects.

I’m hoping the meds will start kicking in soon, though, and I won’t have another relapse. I was a bit worried about my liver because after I took the cortisone, I went a nice yellow colour. Not good. It cleared up as soon as I stopped taking the tapering oral dose, to my immense relief. I’m glad they are keeping tabs on my dear old liver. I don’t know what I’d do without it 🙂

So that’s about it as far as the trials go. I’m not feeling great benefits from it yet, but neither am I having any type of side-effects with it.  

Written by Maggie

April 10, 2007 at 9:17 pm

Posted in Uncategorized

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