Has anyone been asked to participate in a new trial of FFP104 if so what are your thoughts?
Clinical trial: Has anyone been asked to... - PBC Foundation
Clinical trial
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Hi
I'm taking part in the trial at the QE only a few weeks left then it's just follow up visits
Maybe I can help with the odd answer !
Anita
Hi Neata
I'm a bit concerned because it seams to involve 2 liver biopsys
How often do you have to go to the hospital for the treatment and how long does each infusion l take ?
Liver biopsies aren't a must, I've not had one at all.
I had my infusion yesterday it took an hour, sounds a long time but it flies past, the research staff and doctors are lovely.
I arrive at 9:15 ish and leave at 2:30 ish, every time I've been I've taken books, iPad, and knitting and have never had time to do anything other than drink coffee and natter, I only used the TV once last week to watch sister Rita at the Lally centre !
I'm really going to miss it in 4 weeks i finish , but at least I go back for follow ups before and after Christmas
Hope this helps
I've waffled that much forgot to answer one question !
I go every week , first two weeks it's a couple of times but the second visit is a short one
Thank you Neata I'm only concerned because I'm starting a new job next week only 3. Days a week . Have had any side effects at all ?
No I'm sorry I don't know ! Sounds daft but I always wonder if you know do you decide you've got every symptom ?
You get a complete check by doctor before the infusion and your never left alone whilst your there, lots of BP and temp taken, full check-up by doctor before you leave and emergency numbers to phone if you need too
I would encourage trials as without them a cause and cure might never be found
Where would you be going to have yours done ?
I've no idea they haven't said yet I'm in Essex so I'm guessing London x
Hi
I would say yes it a really good experience and you feel as if you doing something to help.you get the best medical care there is so if there was anything else going on in your body they'll find it, it worth doing just for that. Hope this helps. Best wishes