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Hellies clinical trial adventures part four

Oh and I haven't grown any horns or tail or anything like that either. So all in all, it's ok.

In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 4, where Hellie takes some massive pills for the first time.

The day is finally here for the drugs (or not drugs if it is the placebo) to be taken. Before I go into gruelling detail on what it was like to swallow those pills, let’s talk briefly about the Drug name. I have been mispronouncing Bexarotene putting the emphasis on Bexa-RO-tene when it is more Bexaro-TEne.

Had an interesting chat with my workmate about the trickiness of the names of some of the MS drugs and the fact that you often end up feeling at a disadvantage when you can’t even pronounce the drugs and most likely will get corrected by a health professional. You set the precedent of being a “bit of a noob” (as my 9 year old would say). With MS it can get even more “fun” as the symptoms often too are hopeless to pronounce.

Try asking your GP for “Amitriptyline for your Dysaesthesia” without tripping on your tongue in the process. Add cog fog to this and it generally comes out as “Yo Doc, gimme some whatcha-call-it for my thingy-do-dah”…or maybe that's just me?

hand holding large pills

Anyway, let’s talk pills. Yes those capsules were massive. They were not easy to swallow, but they weren’t as bad as I thought they would be either. They went down quite quickly and didn’t get stuck as they are smooth, but I kept on getting them traveling to the back of my throat and sort of not wanting to go down further. So I had to drink a lot. I survived the first go anyway, we will see how it goes next time.

So how am I feeling a day after? I am fine, my stomach was gurgling and rumbling about 30 mins after taking the pills. But that may have been because I took the pills with a yoghurt milkshake thingy, something I don’t normally drink and my stomach might just have thought, ok “what is this then”? I slept badly, but I do on most nights so nothing new there. However every time I woke up, I annoyingly thought “So how am I feeling, any side-effects?”. I worry a bit that I will be unbearably aware about every single niggle from now on and therefore unbearably annoying too! 

But sitting at my desk today, I feel ok. I am very fatigued today, more than yesterday. But again, that can just be the ups and downs of MS. Oh and I haven't grown any horns or tail or anything like that either. So all in all, it is ok.

Next week I will go up to the hospital again for tests. Must remember to fast before I go up there. I also need to fill in a diary of all the pills I have taken and note down any noticeable side effects. If something is very bad, I need to contact Karen the research nurse straight away. I have a number for emergency out of hours as well. So I do feel well looked after.