Hellie's clinical trial adventures: part ten


17 September 2018

I am now waiting for news to find out what will happen next. I am guessing I might be asked to stop the trial for good as this gallstone issue is muddling things up.

In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 10, where Hellie starts taking the drug again, but then has to stop again after another pain attack.

Life has been a bit of up and down lately. I was taken off the trial to make sure I was ok with my strange liver values. I went on holiday with the family, had a nice time. Then I came back and took my drugs on the Monday evening with scheduled test on the Friday for the liver values. Well that all went fine. 

However on the Tuesday, half an hour or so after lunch I was in crippling pian again. Same as last time in the upper abdomen. Pretty sure it was a gallstone attack I took some gaviscon and ibuprofen. Sat down on the sofa as I was at home with the kids rather than at work. Breathing my way through it, almost thinking of it like being in labour when the waves of excruciating pain hit. It kept on at it for a few hours. I sent a message up to Addenbrookes telling them about the pain and they told me to once again come off the drug. I felt disappointed but as the pain was so bad, I went with it. 

I had a blood test done a few days later at my GPs. But I haven't yet found out if my liver has done anything fun meanwhile this time.

I feel very annoyed that this has happened, and I am 90% sure it is related to the gallstones. Ok the timing is a bit weird, you take the drug after being off it for a week and then the day after you are in severe pain. But it did happen 30 mins or so after lunch. Just like last time. Since coming off the drug I have not had any more attacks, but I have felt very tender in my right hand side where the gallbladder is located. 

So where am I up to in getting this seen to? We I am on a list for another proper ultrasound scan, but there's a 6-8 week waiting list. meanwhile I am trying my best to not aggravate it by keeping fatty food away. Well I should do that anyway whilst being on this trial. I am rather paranoid now as I can almost feel niggling aches 30 mins after all food. It also starts hurting with excercise, not horrible, but it makes itself constantly reminded that it is there.

I am now waiting for news to find out what will happen next. I am guessing I might be asked to stop the trial for good as this gallstone issue is muddling things up.

Hopefully I'll find out before next week, stay tuned! 

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