Started the Urso today

Felt a bit strange today getting the urso and taking first tablet. At least I know what the score is now and the 3 months of waiting and wondering is over. I did find out that my ama test was the m2 type today which i think holds more significance to pbc so all in all it stacks up.

I am told i have to take urso for the rest of my life, has anyone been able to come off urso because of any improvement i wonder ? There will be 4 weekly blood tests to check whether my liver can cope with the urso, is this the norm?

I suppose I have also been wondering whether the urso will make me feel any better welcome any answers to that too!

I am not great at remembering to take tablets but looks like i will just have to get used to it!

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  • I think some people have chosen to come off urso, as they don't feel it helps or has not improved their symptoms, but I intend to carry on with mine as it has had the desired effects on my bloods. as far as I am concerned urso is doing what my liver isn't so I can't see a reason not to keep taking it. I forget to take it often and that is after 18 months or more, but try really hard...... I don't really have any symptoms so can not answer if it helps with some or all of them, I am sure others can.

    Take all the blood tests you can, it is good they are monitoring you.

    Good luck hope it helps and you get used to taking .

    Lou

  • I'm pretty bad at remembering to take tabs too. I've spent most of the past 5 weeks in a blind panic, counting tablets to make sure I have taken them. But then the pharmacist told me that I can take them all as one dose. Since the pressure of having to remember 3 doses has been lifted, I have found it much easier to remember to take them 3 times a day.The brain is a funny thing :-)

  • I'm rubbish at remembering too, infact this post has prompted me to take my first 2! Before I was diagnosed for some reason got myself into a pickle about having to take something for the rest of my life but when I then got them and read the possible side effects I felt so much better. Like SC49 says the brain is certainly a funny thing! Because there wasn't a list as long as your arm listing poss side effects i felt as if what was in the tablets wasn't so bad after all. I've not done any more reasearch into what they contain but if they are just artificial bile salts then that doesn't seem to bad to me! Maybe it is a case of what I don't know won't bother me! Maybe I should care what I'm putting into my body as I do when it comes to what I eat and drink but like Lou said it is also having a good effect on my blood tests so I feel safer taking them and will continue to. If the info says it can help slow down the progression of the disease and they are working for me then I am going to continue to take them. Mel x

  • I take two a day and have seen an improvement in my blood tests. I am lucky not to have any symptoms, but I can't say if it is because of the Urso or not. I set up a bottle with the pills I need to take for the day. I also take three milk thistle, a pressure pill, and a vitamin. This makes it so much easier to monitor whether I have taken them or not. The biggest change for me towards feeling better has been in a change of diet and weight loss. Wrapping my head around this diagnosis was the most difficult for me, but I am a positive thinker and intend to be like those who have lived long vital lives in spite of the PBC. I will do everything in my power to promote the healing of my my mind, body and spirit. So continue to enjoy life and put your focus on that, do not make your illness your identity. It is not who we really are. It is just what is happening to our bodies now. The past does not have to determine our future. We can make a difference with the choices we make each day. Exercise, diet, and attitude matter and so does what we think. Choose good thoughts. I know I rambled on, but I am very passionate about being more than just a survivor.

  • thanks this is very nice and wise words, however the pains in the mornings just makes feel rotten, living with painkiller every day is just discouraging, but your words lift me up this morning

    ns

  • I've been taking three a day (one after every meal) for nearly 2 years. I started having monthly blood tests, but my bloods improved so much, it's gone done to 6 monthly. It doesn't really improve the symptoms though. The PBC brain fog means I am also not good at remembering to take them or taking too many, but I bought a pill dispenser from the chemist, put my 3 tablets in it in the morning, and so I know I've taken the right number at the end of the day. Don't make the mistake of coming off them if your bloods improve - if they improve, it means they're working!

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