newly diagnosed

[kingsnorth]

I was diagnosed with pbc two weeks ago by way of biopsy I have started URSO I have been reading that lots of people don't respond to URSO and I might be one of them Im am so worried. Im 67

[4pjx__]

Wel, you might be one of them but also you might not be one of them! I was diagnosed in May 2017 and had that exact same feeling. Turns out I have responded pretty well to the Urso and last visit they said I was stable. In my opinion, if you have responded well to other medications you've been given in the past there is no reason to think you won't respond to this treatment. Just go with positive attitudes for now and see what happens. Most people do have positive results.

Good Luck!

Pam

[kingsnorth in reply to 4pjx__]

Thanks Pam l do try to be positive but struggle with yet another autoimmune problem. I have sjogrens lupus and now this. I will think positive until my gastro appointment in June

[4pjx__ in reply to kingsnorth]

Oh my gosh! You must feel overwhelmed! Oh yeah, easy for me to sit back say "stay positive", isn't it? I apologize. I do sincerely hope you are able to see your way through all of those illnesses. I'll be sending up some prayers for you. I was diagnosed at stage 3, severe fibrosis. I do feel better since I started Urso and I think my health has improved. Inwish the same for you.

Pam

[mattiasw]

If you have only taken URSO for 2 weeks, you do not know if you respond yet. I assume your doctor has booked a follow-up meeting, where he is going to make a lot of blood tests to see how your results have changed.

[kingsnorth in reply to mattiasw]

I have a consultants appt again at the beginning of June.

[liver-bird]

More people respond to urso than do not so don't panic, the odds are on your side. I found being newly diagnosed with Pbc was a very stressful time as there is much to learn. You will gradually come to accept the condition - remember it is slow moving. You can do much to help yourself be eating moderately, no alcohol and plenty of rest.

Keep in touch with the good folks here as they understand and have lots of knowledge. Make sure you join the Pbc Foundation who have accurate and up-to-date information. Welcome to the very exclusive PBC club 😃. Diane (diagnosed 4 years ago)

[kingsnorth in reply to liver-bird]

Thank you Diane l do still try to do acqua classes each week should l be eating less l wonder l eat 3 times a day usually porridge with fruit in the morning perhas dippy egs lunchtime then main meal abt 6is which would be homemade soup with perhaps a wholemeal roll. I have a roast on sunday but small and only ever chicken. I do quite a bit of fruit and walnuts or almonds does that sound ok. Ive joined a forum and also pbc foundation and of course this useful site. Im worried that l havent been put on steroids as its autoimmune and attacking my bile ducts x

[liver-bird]

Sounds like you are eating and exercising well. I am in UK and have not been given steroids either, I guess they resist giving us these as they probably carry their own risks.

I have several autoimmunes and these have led to osteoporosis due to malabsorption vitamin D, it's not even clear what came first and whether one caused another.

I understand there is a lot of research into autoimmune disorders so let us hope they have a breakthrough in time to put us out of our misery. 😃. Best wishes to you, keep in touch. Diane

[kingsnorth in reply to liver-bird]

I have sjorgens and lupus bloody immune system is buggered. I will keep in touch as im very anxious at the moment because im getting niggling right sided pain of a night didnt have it before urso. I live in canterbury kent xx