Question about Ursodiol: I have just been... - PBC Foundation

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Question about Ursodiol

engasser profile image
9 Replies

I have just been "officially" diagnosed with stage 2 PBC this week and started Ursodiol tonight. Does anyone know how long it takes until it begins to help? I know the fatique will probably not go away, but I have liver, hip, and back pain along with itchyness and hope these symptoms will lessen. I wish the fatigue would go away. My GI Doctor prescribed 300mg three times a day. Does anyone take it twice a day? I work 3 night shifts a week and cant see how I can take it the same time every day - I REALLY dont want to set my alarm while I am sleeping to take my medication.

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engasser
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LindaRose profile image
LindaRose

Welcome to the PBC world !!

Why not go back to your doctor and work out a time schedule with him ? You don't have to take it at exactly the same time every day just regularly and with or without food I believe.

Controlling the fatigue is all about pacing yourself and possible life and work changes. I would be exhausted doing 3 night shifts a week. Your work should be able to be flexible now you have been diagnosed.and its your responsibility to give your self a working life that is best for your health both body and mind. Good luck and take it easy

Hi, it should start working quite quickly weeks rather than months... I take 750 as 5 tablets and take them all at the same time after breakfast, if I remember, I forget quite a lot so take at night and then carry on as normal the next day. It doesn't seem to make a lot of difference. I find it better to take with Food as they taste horrible. Going for next bloods tomorrow for appt at Barts in 2 weeks, always a bit nervous until the appt.

Lou

gracesofia profile image
gracesofia

Hi. Ihave also been duagnised recently February 15th and started on tablets just over 4 weeks ago same as you 300mg 3 times a day and already my LFTs are coming down and my itchiness has definitely subsided still there just to remind me though but no where near as bad as it was but with PBC everybody seems to be so different with there symptoms. Hope you get it sorted with your gp must be hard doing nights and having to think about tsking tablets maybe they will let you take it once a day! I am after 3 months going down to once a day. Take care x

engasser profile image
engasser

Thanks for your advice. I might call and see if I can take it morning and night. I can't change working night shift. I have done it all my life it seems. The day shift position has ten times the stress so I think that might be worse. I can't leave because I now need the health insurance more than ever and I have great coverage. I do look forward to feeling a little better. I blamed feeling crappy on my fibromyalgia. Hopefully it was my PBC and some of the symptoms will go away. Thanks again. You guys are the best.

sillybilly profile image
sillybilly

Hi I also do 3 nights a week , I have not been started on urso but do take a lot of other meds. I find it better to take them at breakfast , that way if I work the night I take them before I go to bed and if I haven't worked I take them when I get up . It works for me . X

engasser profile image
engasser in reply to sillybilly

Thank you.

Hello emgasser.

Well I started on urso (2 x 300mgs tablets per day) Dec 2010.

Originally the GP wanted to give me 4 x 150mgs per day but I said I'd not take 4 per day and could I just take them at a less interval so he prescribed me at 2 per day. I started taking one at morning and the other one around 9p.m. but I found altho' my bloods started to come down within the 2mths before a repeat blood test, I somehow didn't feel right taking the final one at 9p.m. at night.

I did start with initial heartburn after taking the tablets and also a bit of bloating plus I thought my itching (I'm a night-time itcher) felt worse than prior to starting the tablets. It was only the better blood results that pressed me on to continue with the tablets.

My fatigue that I had during 2010 vanished but I have to say I did have a lifestyle change a couple mths prior to starting on urso at diagnose, I quit a full-time very demanding managerial job as my husband said I should do so. I went back to working voluntary again one day per wk and at present I still do that.

The itching is a different thing unfortunately. It has persisted but over time it has improved somewhat. I find these days I start feeling the prickles around 9p.m. and then around 11p.m., normally if a night when I do itch (as I don't every night but more often than not) but I have noticed in the last month or so the itching hasn't been at full throttle around 11p.m., it seems to be at its worse if I wake up during the night which I do quite a lot and then I can't return to sleep due to the itching but it has vanished around 5a.m.

There has been a mention on this site of taking the tablets all in one go at morning as it doesn't seem to matter when and how you take the tablets really tho' I would say with a snack or meal. I have experimented myself over the last 2yrs and tried different ways. I have taken mine a whole one or a morning, half a tablet at lunchtime and then the final half at teatime and got no different results BUT I did get a different results myself in taking the full 600mgs per day all in one go at morning with breakfast. I noticed the few days I did this I started itching later on in the morning and it isn't something I normally do so I do think that altho' urso can help with the itch, it can also cause it so it is a case of a battle with oneself there.

I know for me the best way to take the urso is the one tablet at breakfast, the other one with evening meal. I have in the last few mths started taking a milk thistle capsule at lunchtime and I have got better blood results. I did experiment with taking milk thistle for a mth last yr after 2 blood results that had started to go the wrong way, got great results and then withdrew to find them starting the wrong way again so restarted Dec 2012 and got grat blood results back in Jan.

engasser profile image
engasser

Thanks sillybilly. I already slept through my 12:00 dose. Twice a day will be more helpful if I can tolerate it.

Hi Engasser,

I have been on URSO for 12 weeks and my liver results are improving. I take 900mg once a day after my evening meal as prescribed by my consultant (have had no problems whatsoever).

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