Fingolimod trials update and a wedding anniversary…
The appointments that I had in Jo’burg last week for the fingolimod trials that I am on went very smoothly indeed. Everything went according to schedule and it turned out not to be so bad. Not that I had expected it to be bad – I just wasn’t looking forward to it because it is such a schlepp and we had to leave Bluebeary alone at home overnight.
This is a pretty poor attitude to have after all these trials have done for me. I am ashamed :-p
Anyway, we had quite a dream of a day. It was smooth-sailing as far as the traffic situation in Jo’ies went. We didn’t even have to slack down on the highway, nevermind sit in traffic for hours. (Although we did do a fair amount of sitting the next day, but it wasn’t too bad. well, not if you consider two hours in traffic for a 26km trip as being ‘not too bad’, but anyway).
First stop, the insurance company’s neurologist so I could have a check-up regarding my eligibility for another year on disability pension. That went smoothly enough. Actually a very sweet guy, the neurologist. I have revised my opinion and decided that I like him. For the first time, we didn’t have to wait for our appointment. At All. Nice.
Then across ‘town’ to the skin specialist. Now, him I really like. He is a fun doctor and he even burnt off my hated wart that I have on my finger for me on the trials’ tab. He also pronounced my skin as ‘very good’ (he did spoil it somewhat by adding, for your age, lol. Eek, apparently 29 year old skin can have quite a lot of sun-damage already. But mine not so much. Yay!) So all good there on the ‘risk for melanoma’ front.
Next, pulmonary lung-function tests. Sailed through them all. Results were better than the previous times but the doc won’t believe me that it’s because I am now employing diaphragmatic breathing principles. But actually that is why.
After that, the dreaded MRI scan. Which really wasn’t so bad, because by then I was half dehydrated, so didn’t have to worry about the need to pee while stuck in a magnetic tube 😉 Had a nice slice of lemon-meringue pie just before which also helped. I am the kind of girl that is bolstered up by chocolate and desserts, not alcohol. Unless the alcohol is in the dessert, ha ha. I was largely annoyed by the technician at the x-ray department, though. I had to have chest x-rays done. First they wouldn’t give me a lead shield for my thyroid (because it ‘got in the way’. Bloody hell, my thyroid is nowhere near my frikkin’ chest!
Then they moved the platform on which I was precariously balanced (with remote control) with no warning whatsoever and I nearly wiped off.
And then they muffed the x-rays so that they came out too dark and I had to do them again. I was pretty narked about that! Especially after they tried to get me to pay for them, too. I pay for nothing on these trials, the pharmaceutical company foots the bill. If it were up to me, I sure wouldn’t be having chest x-rays done. The MRI scan went straight off to Switzerland, as always. But the cool part is that now I am on the extention phase, my neurologist (the co-ordinator of the trials) will be privy to any future MRI’s I have done. That is going to be a huge bonus. Not really sure I want to know what my brain looks like though.
Finally, off to the Opthalmologist. What a sweetie. We got there early and he squeezed me in so we could be done earlier. I got the all-clear from him, too. No Macular Oedema (potential side-effect) and eye-balls looking okay.
By this time, it was nearly five o’ clock. Fortunately, we had made arrangements to sleep at my sister and her husband’s place. We were stuck in traffic for a good hour, but at least we didn’t have to go all the way home, only to leave at 5am the next morning again.
The evening was really nice. They ordered in from Luigi’s, the fabulous Italian restaurant down the road and I had the best pizza ever, called a Renata, with grilled seasonal veggies, drizzled with olive-oil, on a margharita base. Fab. For dessert I got a slice of Tiramisu, which I have always wanted to taste.
My sis and her hub were super good hosts, even insisting that we sleep in their comfy bed while they took the (not comfy) air-mattress. And we got to play with the gorgeous little Sarah-Kate, my 10-month old niece. What a cutie.
Next morning, up at the crack of dawn so we could sit in traffic for another two hours to get to my neuro. Man, I don’t know how they do it, the inhabitants of Gauteng. That’s no life, being stuck in traffic half your life. And it’s just getting worse and worse. Michael and I are unanimous on that point (thank heavens) – it is not for us. We are totally happy where we are, thank you very much. I love our home city. It is tiny, as far as cities go, but large enough not to have a small town mentality. I grew up here and have no desire to leave.
Got to the neuro’s, finally, where he told me that he had gotten the results of all the tests I’d had done the previous day (except the MRI) and that everything looked good and I was accepted to go on the extention phase of the trials. Woohoo!! I signed some paperwork giving consent left, right and centre. Seems like the extention phase is set to last another 2-4 years, or at least until the medicine is FDA approved and available in SA.
I then gave blood and did all the usual EDSS tests and functional composite stuff. No change there, except I did muff one of the mental arithmetic questions, thus ruining my perfect score, lol. Apparently it was still a good attempt, so no worries there.
To wrap up, I had to go and have an ECG done, lie in the hospital for six hours being observed, and then have another ECG done to determine if my heart-rate had dropped (it didn’t).
I am now convinced without a doubt that I have been on the medicine all along, because when I started on the trials two years ago, my heart rate dropped an alarming 30 points. It only does that on the initial dose, so no surprises that it was contant when I switched to the extention. (By the way, on extention phase, everyone gets active medication, even those who were receiving placebo previously). The only question now is which dose I am receiving. I thought we would know for sure now, but alas, it is still a mystery. Could be 0.5mg, could be 1.25mg.
I have a slight, largely unbased suspicion that I may have gone up to the 1.25 from the .5 though. (My neuro disagrees, thinking that whichever dosage I was on, it is likely to have stayed the same). I think I might be on the 1.25.
We only got home at 9pm that evening, quite exhausted. Beary was so happy to see us. We were very lucky in that Michael’s parents had been popping in about four times a day to check in on her, so she had been well looked after. (She had to be let out for a pee, because we didn’t want to leave her outside when we’re not home. Amazingly enough, she didn’t mess AT ALL while we were gone. Not one item/ drop of mess. What a fantastic dog.
That evening and the next day I had a mild headache, which is why I think my dosage was increased. I have been a bit tired this past week, too. Could just have been because I was a bit dehydrated, not liking to drink too much water when I’m on the road (i.e. traffic jams) and lying in MRI machines.
All is good now and I’m moving on and happy to still be on the trials. What a journey I have been on these past two years!
Right now I have to go and cook an anniversary dinner for M and I. 8 years married today. The Tiramisu is in the fridge and now I’m going to make the steak and roast potatoes. Wish me luck. I’ll update later in the week on how it went.