I'm new here

wow..a whole community. Im not alone. I was diagnosed about 25 years ago and have been taking urso for the whole time. My elevated enzymes were 600 when i was diagnosed went to down 110 within 6 months...recently rose to 150 but dr doesn't mind. I never knew the itching was part of it and the fatigue! I find it impossible to lose weight no matter what I do or exercise. I dont take prenisdone...wondering if anyone else has this problem?

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  • Hello Bonnieanne54.

    First of all, good to know that there is someone out there with much longevity after diagnosis of PBC. I was diagnosed almost 6yrs ago now.

    My 'elevated enzymes' were around or slightly less than yours at diagnosis. Mine came down to a good figure in the early days of urso (started December 2010) but have bounced up and down a bit in the last 6yrs. They are still said to be 'ok with PBC'.

    I started itching early 2010, this is how I got to be diagnosed with PBC. Back in 2010 I did have fatigue but never thought anything of it. Fatigue vanished in my case at some point during 2011 but I do get tired usually later afternoons several times in a week due to broken sleep during the night as I start to itch around 11p.m. On the whole I am still with the milder itch to what it was in 2010 and as far as I know not developed any further symptons of PBC. I will be 53 a few months into 2017.

    I believe that prednisone (or prednisolone - I know all about it but nothing to do with PBC. My former late husband took prednisolone) is only used in certain liver disorders, AIH being one of them but I have read on here that some have taken with PBC. I only take the urso and this is the only med I've had since 2010. Prednisone is a steroid and yes it can make a patient put weight on.

    I did lose some weight pre-2010 but I was in a manual job 5 days a week and running up and down stairs a lot in the time I was in work and then I did a voluntary job every Saturday so I was pretty much on the go all the time. My weight is said to be normal for the so-called BMI scale and I've only lost around 7lbs since diagnosis. The GP rounded the urso dose off to my weight being 60kgs but it is less than this. I doubt with just the urso I'll add weight as I don't eat anything really following the evening meal (usually eaten before 6.30p.m) and with fidgeting about during the night due to itching (I tend to get up and go to the loo, probably out of habit now as it does take the itch away temporarily with moving about) I reckon I burn a lot of calories then.

    I did read that urso can in some patient make them add a bit of weight, others it can be opposite.

  • I was dx in 2009 and I gained 6kg which I put down to the URSO, I tried so many times to loose some weight but nothing seemed to work.

    I've had a lot of digestive issues that has taken months to settle down with the help of a dietitian , so not tried to diet again for a while now.

    A friend has had good results from slimming world and she looks so well on it, I was considering joining just a bit worried about upsetting the digestion though.

  • Welcome bonnieanne54! It's always great to hear from someone who has had PBC for a significant amount of time and is continuing to doing well! Would love to hear of any lifestyle changes you did or didn't make after diagnosis! As for weight loss, I feel your pain! I've been trying to lose 15 pounds for about 2 years and it doesn't seem to be going anywhere. Not sure if this is related to PBC, Urso or just a slower post-menopausal metabolism. In any case, I think I'll get back on a strict routine of healthy eating and exercise and give it another try!

    Maureen

  • Wow Bonnieanne 54, how did you manage without this website!! I think 25 years gives us all a big boost - I will leave it to it other members to answer your question, just wanted to say Hi! Kandiepat

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