Helping a study on ursodeoxycholic

[Lcagar63]

Hi everybody. I received a letter today from a health team asking me if I would like to take part in a study to try and find out why some pbc sufferers respond to urso and some don't. They said my hospital records show I would be a good candidate for the study as I am a responder to urso. They said that they were hoping new research would help find new and better treatments for pbc especially for those who are non responders to urso. I will be taking part in the study. I feel I want to do my bit for all us pbc suffers and especially the non responders to urso. Xxx

[Ktltel]

Wonderful. Nice privilege. Let me be the first to say Thank you!

[emerich]

Hi Lcagar 63

I am unable to take urso so really appreciate you and others like you for taking part in this study. Thank you and good luck. x

[Mommytokarasam in reply to emerich]

Why are you unable to take Urso?

[emerich in reply to Mommytokarasam]

I took it for 7 days with no problems, then woke up covered in a rash, swollen eyes and lips and my blood pressure dropped to 64/36 so classed as allergic.

[Fifibee11]

That's fantastic, such a great opportunity. As someone who urso doesn't appear to be working for thank you xx

[Betonarme]

I sometimes do a google search on "PBC research news" or similar key string. Few days ago I came across with something like this:

"Newcastle scientists and medics have developed a promising new test to identify patients with a rare liver disease who will not respond to standard treatment, allowing earlier intervention with alternatives."

May be it has something to do with it above.....or may be not but still interesting news.

Full text can be read here -->

news-medical.net/news/20161...

[susanburgess]

I have also been invited to find out why urso agrees with me and not everyone I have to go to addenbrook hospital will keep you up dated

[Lcagar63 in reply to susanburgess]

I am glad you are also a responder I will be attending Paddington hospital keep in touch let me know how your study goes

[Hidden]

Hello Lcaga63.

I've not heard of this study. Have you got any information of whom is organising this at all? Then I can have a look online. Not sure if it will be on the NHS site, they put UK studies on there under their Clinical Trials section.

[Lcagar63 in reply to Hidden]

Hi peridot it is being organised by uk-pbc nested cohort study I will be going to my hospital in Paddington London. They will be testing my blood, urine, stools and giving me scans and fibro scans so I also get checked so I gain something as well

[GrittyReads]

I may be the only one to be 'funny' about this ... but ...

How did some random research 'health team' get access to someone's Health Records?

I'm very dubious about things like this. I signed something in my GP Practice to say I didn't want my records made open, but this was a while ago. Has some new move overridden people's refusals? Or am I weirder than I imagine in insisting on mine being kept private?

[Betonarme in reply to GrittyReads]

Good Catch !!

But:

I think as people fill out some forms in their first visit at hospital or clinic whatever....they can check or uncheck if they volunteer to be considered for Research purposes, studies etc. or may be if their data/material can be given/used by the 3rd parties for research purposes.

I believe ( at least want to believe) that those 3rd parties only see patient x,y,z and their clinical data without real names and contact details. Patient gets contacted only from the health team she/he is touch with and asked as above.

[Lcagar63 in reply to GrittyReads]

I will be going to Paddington hospital where I am being treated , to do the study. So it is something to do with the hospital not just a random research team!! I never signed anything to say I don't want my medical records looked at. I am happy to be part of this research.

[Hidden in reply to Lcagar63]

Hello Lcagar63.

Just read your further posting. Thank you for clarifying. This is how I thought myself if there were any clinical trials I might be approached.

[Lcagar63 in reply to GrittyReads]

I will be attending the hospital that treats me for my pbc to do the study so it is not some random research team!!! I am glad I never signed any privacy forms as I may not have been asked to take part. I will be getting lots of test done so my pbc is been looked at as well so everyone's a winner

[Lcagar63 in reply to GrittyReads]

My last two messages are for you I sent them to betonarme by mistake. Just to let . You know it is not some random research team. It will be at Paddington hospital where I'm treated for my pbc. I never signed privacy forms and I'm glad I l NOT as I would not have been asked to take part. I will be getting lots of tests done eg fibro scans, blood tests, ultra scans urine test and stool test.so win win all round

[Hidden in reply to GrittyReads]

Hello GrittyReads.

I did think of this afterwards. I didn't just let my GP surgery know once but twice that I didn't want my medical records shared.

The odd thing is that since I got PBC I've had what I call junk mail (as not requested it) from various organisations all to do with health. I've had a few times letters from some private health company who say you can have a full medical health check with scans, bloods, etc and the date they are going to be at some hotel not far from where I live. Never had anything like this before I developed this PBC.

I've also had mail from companies who do funeral plans and not once but a few times now from a chemist who originally could get your prescription at the GP surgery and then mail it to you (it is on tv this company as UK) and my GP surgery was named on it specifically! I used their freepost envelope to write across and mailed it back to them twice. Recently they are sending out amended letters stating that they can mail your prescription to you if you order at your GP surgery as from April 1st chemists can no longer take over the ordering of repeat scripts for patients, you have to do it yourself. I always have done and glad I did later last year as for some reason on two occasions there was a problem obtaining the urso.

I know I've not unknowingly signed anything or anyone has asked me (yet) if I want to take part in any clinical trials. I know I might expect a doctor to mention and ask if I was to see him/her. Or apparently you can give your details that you would like to maybe take part in any and that is another way you can be approached.

Going back to GP surgeries and records, I found it odd last year when I received a letter about the over 40s health check and it wasn't sent from my GP surgery though it was legitimate and the NHS. The health check wasn't to be performed at my own GP surgery, one of the health centres in my town. i then several months later after I didn't take up the offer receive similar letter from my own GP surgery about the very same. So I do think regardless our details are 'out there'.

[katim]

NIce for you and for all of us, of course! I'd like to say (also like Ktitel)....THANK YOU

[Bonnieanne54]

I am fortunate to respond to urso and have been stable for 22 years. I also am part of this study in the United States as well as a genetic one ( my daughter doesn't have it but gets routine blood tests). It's relatively new to this generation so they have no data to see if it's hereditary Perhaps if it is , and I hope it's not, they can look for it earlier and earlier

[fenwayjerry06]

I have participated in a study also. I was one of the patients that did not respond as well to Urso. What kind of study will you be particating in?

[Lcagar63 in reply to fenwayjerry06]

I will be attending Paddington hospital where I am treated for my pbc.they said I will have fibro scans, ultra scans, blood tests. Urine tests and stool tests. When all te study is done I will get all results of my tests.i will also fill in questionnaires. They are trying to find out as much research as possible to help investigators develope better treatments for people with pbc

[fenwayjerry06 in reply to Lcagar63]

I had a study just like yours at UC Davis. I had to inject myself with a rheumatoid arthritis medicine. Do you know if you are getting any medicine?

[Lcagar63]

Hi fenwayjerry06 I won't be taking any medicine. Only blood tests, urine tests, stool tests, ultra scans and fibro scans and answering questionnaires.

[Godfrey1]

Hi, I'm doing the same at Birmingham. I'm a non-responder and have taken part in other studies in the past. I'm happy to help for many reasons not least of all my daughter. Maybe if people in the past hadn't agreed to aid research we wouldn't even have had Urso to date.

Everyone must make their own choices but personally I'm so grateful for the care and attention I receive from QEHB I will do whatever I can to improve the treatment options for the future.

In the past I had a major bit D deficiency which came to light in a previous trial, now the awful pains in my legs have gone and that's another reason I'm grateful.

It's such a personal choice and I'm always offered a get out if I want to take it.

Keep well everyone 😀

[Lcagar63]

A great positive outlook godfrey1. Sorry to hear you are not a responder to urso.hopefully with research there will be more and new treatments for people like yourself. Keep being positive

[swinstan]

As someone who used to do research, the NHS is very strict with ethics. The most likely scenario is that the researcher will have supplied all letters and materials for the hospital staff to add names and send out. It's only if you respond to the letter that your name would become known.

[Chazzy]

Go you!!

[58goose]

I'm also part of a clinical study for the same thing via the Norfolk & Norwich hospital. Glad to do my bit if it gives the researchers more info about anything to do with PBC.