Pbc

[janine541]

Has any body been called to try a new tested drug

I’ve received plenty of info and they say I will be monitored closely

Not sure the name but hoping it’s successful with the itch

[Ktltel]

Please.... What is the name? Seladelpar? Ocaliva?

[janine541 in reply to Ktltel]

Randomised it’s a new study

[Lilbear89 in reply to janine541]

Is the trial called glimmer?,

[janine541 in reply to Lilbear89]

I’m not sure I will find out more on Monday and let you all know

[kimphoebe]

If it seadelpar I’m on it and it showing positive results. Got fibroscan on Monday so hopefully my score of 10.4 should be lower. 😊

[janine541 in reply to kimphoebe]

Good luck

This is a survey I’m doing and it’s to see if it’s effective

So not sure if it can be prescribed yet

[butterflyEi]

best wishes with the trial janine541 I hope it has good results on the itch for you

[janine541 in reply to butterflyEi]

Me too I have sores ive itched that much

Hope your well

[Dyfry]

I tried everything, for years.. I've been on gabapentin for 8 months, it's been life changing! Talk to your GI about trying it.

[janine541 in reply to Dyfry]

I will

Does it stop the itch

[Dyfry]

It did for me..

[My-life]

I have been asked. As soon as monday i will fill out paperwork. My information was on face book. Im going to a meeting in Albuquerque on the 27th for questions and answers. Free dinner to. They asked anything you cant eat? No shell fish. Lol

[Jennyhadenough]

Janine541 do you have pbc and aih?

Are you in the USA?

I ask because I have pbc and aih and I was told that because of the 2 autoimmune liver diseases that I would never be eligible for a study.

I hope that you are doing well, I’m hoping that I was told wrong but I doubt it.

[janine541 in reply to Jennyhadenough]

Hi Jenny

I have definitely got pbc

But my liver biopsy showed traces of AIH but my bloods dont

[JaneAnderson1966 in reply to Jennyhadenough]

Hi Jenny, just noticed your post as I was responding to Janine about a clinical trial I am about to start. I too was diagnosed with PBC/AIH overlap after a biopsy nearly 2 years ago. I have however, just been seen by Professor Steven Ryder at QMC Nottingham (as part of an examination in relation to the clinical trial). He is adamant that I don't actually have AIH (he says it is extremely rare - only 1% of PBC patients are truly overlap) and says that the mis-diagnosis from the biopsy is because the PBC had caused some 'collateral' damage to liver cells prior to biopsy that might be interpreted as AIH. He backs up his diagnosis with the fact that the steroids I was on to treat the AIH did not change my blood/LFTs when they are usually highly efficient at tackling the issue. Hope this might be useful information for you.

Take care!

Jane

[Jennyhadenough in reply to JaneAnderson1966]

I would love not to have both. I am asma positive and my alt, ast, and alp was elevating quickly. Urso only brought down my alp. I live in the USA.

Aih was not mention in my first biopsy.

To be honest I am hoping that the entire diagnosis is wrong. I doubt it though

[JaneAnderson1966]

I am also being considered for a new trial. I think it is for seladelpar (or something like that). I have an appointment at Queen's Medical Centre, Nottingham next week for tests to see if I am suitable. I am partial responder to URSO but expressed reluctance to take OCA because of the itch. I believe this new drug doesn't have side effect of itching. Fingers crossed they accept me.

Hope everyone is keeping well!

[janine541 in reply to JaneAnderson1966]

Hi I wish you well my itch was their before treatment and it’s really bad

I have got some calamine lotion not that it helps much

[JaneAnderson1966]

Hi Janine, I have just been accepted onto a clinical trial for seladelpar (think that’s how you spell it). I am urso partial responder and this medication should reduce my abnormal readings without bringing back the itch. I have had my check up and tests done at QMC Nottingham and been seen by Prof Ryder. Have been put on new batches of urso (everyone on study has to take same brand) and have done training on how to complete e-diary. Due back in a week to collect e-diary and drugs. Good news for me was that prof Ryder is confident that I only have PBC and not PBC/hepatitis overlap as diagnosed. Will let you know how I get on. Good luck making your decision 😁