I’ve been told the disease is progressing fast and will need transplant 3-5 years
I’m a non responder to Urso etc.
Consultant said he might try a steroid budesonide however need to have a scan to check that I’m not starting with chirrosis
Anyone else tried this
Hi my consultant wants to try steroids but my dad was a nurse and advised to stay away for as long as poss
Hi
I'd suggest contacting the PBC Foundation, they have such a depth of knowledge and it may be good to chat to someone there.
Wishing you all the very best xx
Sorry to read this Melwoods do I remember that you were hoping to be part of a trial for itching? This disease is very unpredictable. Hope you find a way through the mire.
best wishes
Hi again Melwoods
Just on face book (PBC Angels) and have seen this article which I am currently reading but wondered if it may be of interest to you and your specialist.
Melwoods
Yes I’ve read steroids arrest progression of pbc. You are the first I’ve heard about with fast progression. When were you diagnosed? I’m convinced our nutrition and controlling our stress is crucial for us. Are you drinking alcohol, eating meat and a lot of sugar? Do you have a hepetologist who specializes in pbc? I’m planning to see an Ayurvedic nutritionist and a nutritionist, I’ll keep posting on what I find out.
Jlruggie
I was on Budesonide for a few months. I experienced a few lower level side effects but was then put onto Prednisolone which gave me more severe side effects. Budesonide is easier on the system than Prednisolone so I think they like to try you on that first. Side effects I experienced on Budesonide: 3-4 lbs weight gain over 3 months, bit of facial hair, waking up early & needing loo through night, started being a bit snappy / short tempered. (On the plus side, skin was fantastic, hair lush and thick, eyelashes grew longer, eczema I've had for 30 years cleared up within a week.).
In terms of the medical outcome, I didn't respond to either which they said is very unusual for AIH, so they have just about concluded I haven't got AIH Crossover after all and the deterioration is likely down to the PBC becoming more rampant, though they're still investigating and trying other medication - started bezafibrate in Dec and feel pretty good.
I’ve been on bezafibrate for over a year now x
How have you found bezafibrate? As said, I feel pretty well on it but my hair is falling out rapidly which I'm hoping will level out once my body is used to it. Also do you have AiH crossover or straight PBC? I presumed you had AiH crossover with the suggestion of steroids, but maybe I got the wrong end of the stick?
Melwoods
I just read April 2018 medscan article that ButterflyEi referred to on Mirtazapine and PBC. I just realized I was prescribed the antidepressant drug Remerol (Mirtazapine) for depression around when I was diagnosed for pbc. My Ursodyoxycholine had my enzymes at normal for years.Remerol helped me sleep but I had rapid weight gain so I switched to Zoloft (Sertraline) and took sertraline for a few years. I don’t take an antidepressant now and my enzymes have only been slightly elevated. I’m going to ask doctor about Remerol to see if I can get enzymes to normal again. It’s the elevated enzymes that are supposed to lead to cirrhosis from what I understand. Let us know about whether you have cirrhosis of not. Thank you for posting and speaking out about your pbc experience.
Jlruggie
Talk to the people at the 'PBC Foundation' who host this site on 'Health Unlocked' . There is a link to their site at the top of this page. Their website is a wonderful source of info too, and it might help if you read through everything on there. I think you have to join to see all the really useful stuff, but it is just a formality and free ... Do talk to them, but you do also need to learn as much as you can, yourself, as lots of Drs don't know all the latest thoughts on PBC, such as the rigorous diagnostic process that should be followed, and all the latest developments.
I'm not an expert, but there are several things in your message that I don't understand. For example, if you are not responding to Urso, has it been suggested that you might be able to try Ocaliva? Also, how does he think your PBC is progressing so fast that you might need a transplant, if he does not already know whether there is any cirrhosis or not? Finally what does he mean by a scan? If he means ultrasound, then yes, that can see 'mass scarring' of the liver, but a biopsy is usually required to actually 'see' cirrhosis at the level of the microscopic biliary tubules. If he means a fibroscan, then that is better, but I'm not familiar with the actions and response you describe, so I really, really would talk to the 'PBC F' advisors and also, try to learn all you can from their website.
I'm not a Dr, but I just don't understand much of this approach. Do talk to the 'PBC F' people.
I’m under Birmingham and can’t take octavia as I have irretractable itch and currently on the glimmer trial for this
My bloods have been constantly high now which he said will lead to cirrhosis
I’m having a fibrescan . I had a biopsy early on when first diagnosed.
I was told the same about the transplant. The Urso stopped for me. My heptologist started me on a specialty drug called Ocaliva which most non responders to Urso are placed on. It has slowed the progression. & has been a God send for me. Im stage 4 PBC, stage F4 cirrhosis, large varicies, & my liver is inlarged with my spleen being the same in size as my liver, which is due to the cirrhosis. I would discuss trying Ocaliva with your specialist before attempting the steroid. I've never heard of a PBC patient being placed on a steroid because of the Urso not working. Best of luck.
Stay Strong❣️
Shannon
They won’t try it as the side affect is itching and the itch has broken me the past 2 years.. I’m currently on a trial for it but sadly it’s not working x
I like to see the positive on Ocaliva. I was looking through the many articles I have saved. I have one that was printed April 2016 stating Urso had failed to improve mortality. Presented to the Internation Liver Congress.
The article from International Liver Congress says Ocaliva improved & stabilized fibrosis in those who didn’t benefit with Urso. Good news👍
The itching will eventually ease up. Praying they figure something for you soon. I progressed quickly due to not having a treatment plan
Drs who don’t understand 
Used Ursofalk for too long but...
Hot flushes...menopause or PBC?
Betablockers for small varises
