Hi all
Just to let you all know that the seladelpar trial has been stopped completely, just had a call from my trial nurse who has been brilliant wright the way through this trial. So now I’m at a loss as to what comes next. Will get my usual appointment through soon to discuss what is next. Very disappointed 😔
Great😕.
Thank you for keeping us updated. Now what? What about Bezafibrates? I read they helped lower not only liver enzyme numbers but fibroscan scores. A member on this forum (katiagreece) was prescribed bezalip which I believe is bezafibrates. Maybe you read her thread on here. She states her fibroscan went from 11.6 before taking it to 7.6 a year later, to 6.9.
That's pretty amazing I thought. I spoke to my hepatologist about it but unfortunately he said there hasn't been enough professionally confirmed data about fenofibrates and bezafibrates yet. Ugh!
**Maybe we all need to put our heads together and do some research on these fibrates and their response positive and negative towards PBC.
"Anyone with personal experience taking bezafibrates and fenofibrates for their PBC please post it. Either on a new thread or here. Thanks."
Kimphoebe, I may start a new thread on the subject as I'm also on one other Liver forum for NAFLD and they suffer with fibrosis there too. Maybe someone on there has some thoughts.
Stella❤
Hi Stella
Did ask was there any other treatment but she said I should discuss that with my pbc doctor. There are no other trials on offer at moment. Bit worried that I will be asked to carry on treatment in my local hospital, where there is no liver specialist, hopefully that want happen.
I live in South Wales and I was referred to this hospital in Birmingham England 6 years ago. Feeling bit upset at moment and at a loss as to what to do next. Waiting for clinic appointment to come through soon. It only recently they told me I had chirrosis and not got over that yet. 😱
I can understand, that is upsetting friend, I'm sorry to hear it (❤hugs.)
Please keep in mind that even with cirrhosis people can function for many years. Thank goodness the liver is a huge organ. It's no consolation I know, and I know you are upset, who wouldn't be. It's so frustrating...we want to stop fibrosis from getting to cirrhosis in the first place.
We have to be our own health advocates. Ask questions of these health professionals. I realize it's different there. But if we all, here on this forum, can find out more about what's working or not for our PBC we can share it with eachother and when we talk to these healthcare professionals, we just might educate them a bit.
At your next clinic appointment please ask them about bezafibrates. I'll try to send you what I find online through private messaging. You could bring that info with you to your appt. In the meantime please takecare to follow the PBC diet. I saw it once online. Be kind to your liver which I know you are already. I'm all talk aren't I? I myself need to practice what I preach. I'm on a "dont eat anything white" diet. Basically no sugar, salt, processed foods, pasta or flour. I have to say it's hard, but I do feel better. This is to reduce the fat in my liver which also causes fibrosis. Have you ever been diagnosed with fatty liver?
Stella❤
Thanks Stella your are so kind, I will ask them bout bezafibrates. Don’t know why I’m so shocked I had a feeling it was going to happen. It’s probably the after Christmas blues, I need to get my act together. I’m trying to watch everything I eat but it can be so difficult. Thanks you are always a great help I feel bit better now. So on to the next chapter of this ridiculous disease. 😙
I'll message you when I find what I've read on fibrates. My nurse practitioner did some research on them for me too. I'll get her to email what she found to me too.
Also gwillistexas here on this forum sent me a video a while back. It was mostly about OCA. But I remember it made some positive comments on fibrates too. I'll try to find that.
Please don't get down on yourself. You got enough going on already. Most of us feel "just ok" with this disease so it's easy to eat the fun stuff. It's weird. Our Livers can be sick but it usually takes a while before it's manifested in a really obtrusive way. So again, yea..it's SUPER easy to eat whatever we feel like and lose balance. I'm the queen of doing that. ❤ Have a good rest of the late afternoon and a good evening. It's 10:39 a.m. here and I haven't eaten yet. My husband wants fried potatoes!! Ugh!! That's a hard NO. (But it does sound good) But...NO.
Stella
Hi Stella i was put on bezafibrates as my bilirubin was at 900 after a year of treatment it went down to 19 . I was delighted and i am still on them they have kept my numbers low still and helped with some of the symptoms of pbc
Kind regards shaza66
Kimphoebe,
I am really disappointed to see this news. I had pretty high hopes for it as, I am sure you did too.
I am wondering if you might have the option of going to a different clinic where they would have a liver specialist. I seems like you are in the UK? I am not familiar how that system works but it does feel like you are in need of a specialist and it would be good if you could try another clinic.
I too, have been curious about the fenofibrates. I do have a high cholesterol. My GP didn't want me to take the statins because they are hard on the liver. I was figuring if I do have to take the statins maybe I could try the fenofibrates. I think I will ask at my next appointment with the hepatologist.
Let's hope they have a good plan for you moving forward. My GP says that people can go on 20 years with cirrhosis. My biopsy came back stage 3 fibrosis but every time I have an ultrasound they call it cirhosis. So, I really am not too sure where I am. It sucks though.
Whatever you do though, make sure you have some fun every single day.
❤ Pam
I am also disappointed that the trial has been stopped. Although I had only been on it since August, my Alk Phos levels had halved to around 250 so I presume I was on the medication. I am due to see my liver specialist in about a month (when any remaining drug is out my system). The expectation is that my Alk Phos will begin to rise again. I have been informed that I will qualify for Ocaliva because my readings fall into the specified range. Hope you manage to access an alternative therapy.
Kind regards
It’s very disappointing, all my liver bloods were completely normal, will see how they get on now. Not sure how long it will take for the drug to clear my system. Hope all goes well with you x
very disappointed for you kimphoebe, I hope you can stay with the Birmingham hospital, if you are prescribed Obetacholic Acid instead you may have to stay with a centre of excellence rather than be returned to the care of your local hospital. best wishes being sent your way.
Thankyou xx
At the moment, we still have a right to choose so be sure to tell your consultant at QE that staying with them is your preference. Best wishes x
I shall be doing that Thankyou xx
I'm keeping my fingers crossed that we don't lose this. xx Did you decide yet if you will be having a little dog? Or is it too early still?
Thankyou
Yes I did get a new little dog after months of anguish. He does keep me going through the day bless him.
I'm pleased to hear that. I don't know how well I'd be without my little girl. she makes me laugh, then she makes me walk and she understands if I'm in pain and sympathises 
by laying on my feet if I can't get her on my lap!
Oh No, that’s so disappointing for PBC sufferers and for you personally, it seemed it was going so well, and to be in the later stages of the trial, it’s devastating.
I don’t think there’d be any problem with staying at the QE, request it if necessary. You need a new treatment plan , and that’s the best place to be sure of getting one that’s right for you.
I’am on bezafibrate my consultant prescribed it, so it’s worth discussing this with your doctors, I take it and stay on URSO as well, she feels it still has some benefits even though I’ve stopped fully responding to it.
Try and stay positive and do something you enjoy each day, try and stop the negative thoughts with some meditation. I find it helps me to start a little project ( normally restoring or decorating something ) it takes my mind away from myself. Do take care. 🤗 x
Thankyou
Thanks for your thoughts, today’s a new day, time to stop worrying bout things I can’t change. Xx
I have been put on bezafibrate because I’m a non responder and my numbers have come down to almost normal.
Sorry to hear about this. Someone last week posted links to a paper from less than a year ago (I thought it was Stella) which is quite comprehensive and positive.
I self prescribed myself with bezafibrate in 2011 as I was URSO nonresponder and nothing else available. It brought lfts down but those other than Alk phos have always remained well above normal range. I now have cirrhosis quite bad but feel well!
Ask your GP. Whilst fibrates are not listed for PBC they are used for other things and are cheap as chips so your GP can hardly refuse!
The tiny bit of positive research in 2011 that caused me to ask for fibrates is now much much stronger . Give it a go. William
Thankyou
I will ask on my next appointment xx
The key thing is what are your results? Are you on URSO as the basic treatment? My condition is now quite serious so I'm changing to the Royal Surrey at Guildford which is more advanced than my beautiful local St Richard's in Chichester. So if your condition is not too serious and you do a bit of research yourself as you are, and you can get basic monitoring locally such as regular bloods, ultrasound scans, fibroscan, maybe gastroscopy why not stay local as I have for many years? Local is less stress and you can learn enough yourself to know when to move on.
You don't say why you were put on seladelpar - this is an experimental drug - has everything else failed?
Thanks for the advice but being from South Wales, and my local hospital didn’t really know a lot about pbc so they referred me to Birmingham which can gave me much better treatment. Now that i am in the chirrosis stage I think it is for the best for me to stay with nhs England.
Yes I quite understand. I guess we are both at similar stages.
I have been told that I do not (yet) qualify for OCA and as any change of drug is not without risk and OCA has had some bad results, my thought is that bezafibrate does appear safe. Bezafibrate tends to help cholesterol which is usually high for pbc'ers and is safer than statins which can be quite harmful for livers.
Best wishes to you. William
Thankyou xx
Unfortunately, bezafibrates caused me to be hepatitoxic so I wasn't able to continue on with them. My BBC has deteriorated 3 Stages in 3 years to Compensated Cirrhosis. It is difficult to wrap one's head around the Cirrhosis diagnosis. You have my empathy.
hi,
You mentioned you are in South Wales, I don’t know which hospital you went to but there is an excellent consultant at the Gwent Hospital in Newport, who is fully up to date with the PBC world and treatments available here (including Ocaliva and fibrates).
New here and feeling uninformed by my GP 
Stopping Urso on trial
Newly Diagnosed and Terrified 
Low Dose Naltrexone anyone?
