How do I feel about all of this? Well I am delighted to still be involved in the trial. Annoyed I can't take the drugs anymore. But happy that I am still a useful contribution to the trial numbers.
In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 12, where Hellie ends up stopping the drug, but still remains on the trial.
Going up to the hospital today, no... going up EARLY to the hospital today. Fasting, grumpy, tired, missing my coffee and it was 7am. The trains were of course cancelled and running sporadically. Zombie Hellie plods in 30 mins late to her appointment. Sit down in the chair to have my bloods done, closing my eyes while the phlebotomist is looking for a good vein. "Your veins are a bit tired I think." "Just like me then!" Open my eyes only to see a big tray of my blood in test tubes, looking like some sort of shot tray at happy hour at a vampire bar! "Crikey that was a lot of blood" I said. Karen popped her head in explaining that "yes, when we only see you on a monthly basis now, we will take a lot of research blood". Must remember not to look at the tray next time. I am a bit swoony looking at things like blood.
Anyway! Hello! I am still here. Yes I am off the trial medication, but still on the trial. I will now go in on a monthly basis to have tests done and tell them about my funny gallstones/stomach pains to see if we can rule them out being the culprit of the liver going slightly bonkers! I will then have a scan as per the plan at the end of it.
How do I feel about all of this? Well I am delighted to still be involved in the trial. Annoyed I can't take the drugs anymore. But happy that I am still a useful contribution to the trial numbers. Only slightly sad about the fact that if the drug does indeed work and does help with remylination, I would end up in a category that can't take it. Boo.
I am, as I said, going to go for monthly visits now, so the blog will still be going but not with so many updates. Thank you for sticking with me on my adventures. It has been a bit of a rollercoaster ride, and not at all what I expected. What I am taking home from the experience is that I am very well looked after, and that I would definitely take part in other trials if they felt right. The main issues I worried about were mainly symptomatic, but in reality, it ended up being less of that (even though fatigue and headaches have been happening a lot) and more pratical issues, like travelling on messed up trains during a summer that has been hotter than Hades, taking huge pills that get stuck in your thoat and indeed this whole liver value thing. Finding out I have a huge gallstone I guess is an added bonus, if one can call it that...anyway, rollercoaster and all, I am still happy that I have been taking part.
And now I must go drink my coffee and eat some porridge and try to snap out of zombie-mode! See you next month!
MS in the Media
17 May 2019
- Statin has potential as SPMS drug
- EastEnders MS storyline
My Vespa adventure for the MS Trust
13 May 2019
For his next fundraising adventure, our supporter Nick Jolly will be riding 2,500 miles to Hungary on his Vespa scooter. He tells us about the inspiration behind his challenge.
"When you lose something, it makes you appreciate what you have"
13 May 2019
Danielle MacGillivray stars in our new film, Danielle. Here she tells us about her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.