Hellie's clinical trial adventures: part eleven


23 September 2018

What does that mean then, being on the trial, if I am not actually taking any drugs?  

In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 11, where Hellie wonders if she will still remain on the trial after been asked to stop taking the drug for good this time.

Crikey! I am off and on this trial so much! It's a bit like people in the gossip mags who keep splitting up and then getting back together again. Ok, so quick recap: liver test results and a suspected gallstone attack kicked me off the trial. Liver values went down again (but not down to normal). I went back on the trial for a whole full day (!) then had a huge old pain attack again in my upper abdomen. Most likely gallstone related and they told me to stop again and await test results. *sigh*

Up at Addenbrooke's today, after my blood was taken, Prof Coles called me into a room and started off by saying "Sorry that you have been having a rotten time lately". I said, "Well that's not your fault", to which he said, "I think it might be whatever we are giving you that is causing it". He then went on to say that even though the pain might be caused by the gallstone, they do think that the reason my liver values are going up is due to the drug. "So I am on the drug and not Placebo?" I asked, but he answered that sometimes people have reactions to placebo as well so it wasn't a definite. But whatever it is seems to be making my liver values go up, and as they are too worried about permanent liver damage, they told me I have to stop taking the pills. He then suprised me by saying that he still wants me on the trial.

What does that mean then, being on the trial, if I am not actually taking any drugs?  

Well, I guess I am still providing relevant data. Prof Coles pointed out that if indeed this drug will be offered to people with MS one day to help with remyelination, some people might not be able to take it due to liver issues. So I have provided some useful data there. If I indeed was on the drug, and they can be 100% sure that it isn't the gallstones that caused it. 

Oh, I should point out as well that Prof Coles did say it was up to me if I wanted to remain on the trial or not. If I wanted to stop here, I could. But I feel that as long as they think I am useful, I will keep on going. So off it, but still on it! How confusing!

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