Had a trip to qehb today to see hepatologist, first time since tp, having had pbc. Always been surgeons till now. Recovery from op has been thankfully very good, with excellent bloods. So all good there
But, something I had asked before was concerning the possibility of pbc returning in my new, lovely liver. The consensus, although not definitive was that it may do but it may not!!!
However, the hepatologist broached the subject with me, which surprised me, and said there is now some recent study evidence to show that taking Urso post tp for pbc sufferers may be advantageous and has now put me back on it, albeit a slightly lower dose than before
Anyone else heard of this??
Andy
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Huggy7614
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Hello Huggy, Afraid I can,t help with the Urso query and obviously the forum members who can help ( prob Katie with Transplant questions ) are not about at the moment, but until they visit the site I thought I would say hello to you, sure someone will be along who can help soon. Actually I seem to remember Katie is a " Special constable ' if that is the correct term and helps out when required. I however happen to have access to plenty of turkeys, several pouches of Russian black tobacco, and a partridge and a Christmas tree that will be falling from the back of a lorry around Xmas if you,re interested?. Evening Andy!. Hope someone has some answers for you soon . best wishes.
Andy, are you aware that there is a PBC. Foundation site on Health Unlocked? I suddenly had a thought that I,d seen another liver Forum around somewhere, checked, and there it was. Also, having had a quick peep, there does seem to be quite a few mentions of Urso, so it may be worth you posting there.
Yes, I do know of the other group, and am a member of the pbc foundation!
However, I have no bleedin idea how to get onto it!! I only ever really look at this forum!! But you’re right, I should try to post it there too. It may be useful to someone!!
Hello, hello, hello ........... whats going on ere then? Yep correct on the SPC front - 17 years service. Sadly can't help with the Urso post transplant situation, no experience with Urso (or a completed t/p for that matter). However, if QEB is the hospital in charge of your care then you are in great hands especially with the auto-immune illness situation as they have some of the top boffins in UK re. these conditions and I am sure if they've decided the URSO post t/p is a good idea then i'd be willing to bet they know exactly what they are doing.
Best wishes for your continued recovery.
Katie
Huggy7614- I'm pleased for you. It is said that the earlier urso is taken the less likely PBC is to progress. In your case it hasn't even begun. Are you a 1 in 10 or a 9 in 10?
Yes, as I understand, the earlier pbc is identified the longer it can be kept at bay!!!
I’m a 1 in 10!! Had to explain that comment to my partner who hadn’t figured it out!! At various times I was introduced to junior doctors by consultants saying I was a rarity - a man with pbc!!
So rare! I hope they are taking great interest in you - you must be holding a lot of information not yet discovered about cause and triggers of the condition. Do they check your bone density status at QEB and make recommendations? If you ask them, please let us know, esp on the other site!
Can you please let us ignoramus’ , or just me being an ignoramus - which is worse 1 or 10. I’m just guessing from Huggy’s reply that a 1 is good? Or not?
I'm sorry for saying a thing you needed to guess about...
1 person in a1000 may have PBC. Of those, 9 out of 10 are women.
I don't know if it's worse clinically for men or women to have PBC.
Its course varies from person to person. It varies in symptoms. It varies in speed of progression. It isn't curable as yet, which is why Huggy is continuing with the first-line therapy to slow, or possibly prevent progression of disease to his new liver.
It does not necessarily ever lead to cirrhosis. It used to be called Primary Biliary Cirrhosis but it was campaigned for on an international platform to change the name to PBCholangitis, a more accurate description of what occurs.
Next time I see you being argumentative on this site, when you can't resist poking hornets' nests, that's what I shall call you, Your Excellency!
in reply to
ThreeSmiles Miles, here is a link to our info on PBC for your own info;
Measles? oh no! Poor you! And French ones at that!
I just enlarged the Administrator's icon.
For the first time I see that the rising colon goes up under and traverses behind the liver. That explains so much to me. So, thank you Airmiles, for attracting the attention of the Administrator, (again) and giving me a closer look at what looked like angry-sea creature on Planet Earth.
Ahh you have to say my name in a French accent....and (dare I say this given the adverts subject matter) .. the effect will be shattering....(probably before your time of course 😁☹️).
I always thought that was a picture of a jellyfish... you have shattered my illusion☹️
Go and have your tea, Meal Less. Nothing is before my time. I remember when you'd toast a muffin on a day like this, and spread anchovy butter on it. Do that with a regular muffin now and you'll be glad to see the fire-brigade at the door! I'm off to the co-op to see if they got real muffins.
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