Trials for new drug in uk

[Lilbear89]

Hi haven't posted in awhile as I have not had much contact with my Dr at all about the condition all I was told was he was sending me to Birmingham to see professor hirchfield( spelling of name may be wrong) as he is a specialist in pbc. After travelling miles from Swansea to Birmingham I saw him and he said as I'm still itching really quite bad and is effecting my day to day life he said would I be interested about going to a clinical trial for a new drug that is to stop the itching and also has low to no liver toxicity. Of course I said I was interested but be didn't tell me the name of the drug as he wanted to see how my bloods are first. My next appointment is end of November. I'm just wondering if anyone else in the UK has had a clinical trial for any drug to stop the itching and if so what did it involve.

Hope everyone is doing well.

Hugs to you all.

Xxxx

[kimphoebe]

Hi there from Swansea I'm not to far from you in port talbot. I'm currently on a clinical trial under dr Hertchfield but it not for itching. Been on it since may was doing well then had a bit of adverse blood results so they stopped drug for a bit back in it now everything seems ok so far. This is my second trial they really look after you so if you get the chance go for it.

[Lilbear89 in reply to kimphoebe]

Thank you so much for your reply. That has put my mind more at rest now. If you ever want a chat let me know. I really appreciate you getting back to me. Hope all is going well and steady for you.

Just out of curiosity do you or have you ever had the fatigue symptom? And if so was there anything you found that helps?

Thanks for replying xx

[kimphoebe in reply to Lilbear89]

Yes I do suffer with terrible fatigue and tried everything to fight it but now i just give in to it and go asleep. Haven't been to work go for about 2 yrs now because of it. Was dx in 2012 but doctor said probably had it long before that. Sorry can't suggest anything to help.

[Lilbear89 in reply to kimphoebe]

Thanks again for replying and no need to say sorry about not being able to suggest anything as I have not found anything yet either.

I'm still working but only 3 days a week and I'm lucky with my employer as she understands about it as she is a nurse. I work as a private nanny so lots of running around but if I am feeling fatigued then I know she is okay for me to sit with the kids for awhile.

If I find anything that helps I'll let you know

I was diagnosed in 2016 after spending a month in the hospital as I had gone in because I looked like a Simpson that is really the only way to describe how I looked.

Take care and a hug to you to.

Xxx

[kimphoebe in reply to Lilbear89]

Good luck if you get on trial keep in touch. We may be up in Birmingham the same day if you on trial or in clinic be nice to actually see someone with the same condition it can be a lonely disease. Xx

[Pat_H]

Dear Lilbear

Yes, I did a trial at QE Hospital for a drug that stopped the itching. I think I was one of the first to undertake the trial at Birmingham but I believe they were much further on in the trial at Newcastle. I really enjoyed the trial, and had to go to QE Hospital 5 times, 3 sessions (nos.2, 3 and 4) of which were for three days at a time, stopping at the hospital two nights for those three sessions, The first and last sessions were each of 1 day. At sessions 2, 3 and 4 you had a canula in you arm most of the time and your bloods were taken at varying intervals. Between those particular three sessions you had a 12 day period at home when you took the drug or a placebo in liquid form every morning and evening. The liquid came in small, but very heavy, glass bottles, so it was necessary to take quite a large suitcase (a case with wheels was absolutely necessary) with you to carry home the box with 24 bottles in it. I went by train each time and my train fares were reimbursed me. The trial started on the 7 November 2014 and carried onto the 2 January 2015. It was part of a trial that was taking place at Birmingham, Newcastle and one other place, but I can't remember where, I think it was either London or Cambridge. You knew you would be on both the drug and the placebo at sometime during the trial, but you didn't know when.

I should say that, prior to starting the trial, I had to stop taking Questran for quite some time, so that, by the time the trial started I was itching and scratching furiously and drawing blood.

It was marvelous. For a whole fortnight I didn't itch - not once. I had no side effects either, but then, I was only on the drug for twelve days. Dr G Hirschfield explained to me very simply how the drug worked, so that as a non-medical person I could understand.. Apparently it took the bile fluid that is surplus after you have eaten and which usually goes back into the liver, and sent it straight down the rest of the digestive tract, so that no bile fluid was able to attempt to get back into the liver and damage it. I did say at the end of the trial that, if ever they do a six month further trial, please count me in.

The Trial was for a drug made by Lumena Pharmaceuticals. I have no idea whether it is still ongoing or how other people on the trail fared.

I have no idea whether everybody goes through the same process as me because, all the time I was there, I was always the only person on the trial at the time. Certainly I found it very interesting and, as I said above, I enjoyed it and would willingly do a further trial.

Pat

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