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Urso - any hints on taking it?

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Posted 10/12/2013 6:15 PM (GMT 0)
After a range of tests my hep has now decided that my AIH is affecting my biliary ducts which caused my raised readings (although they normalised about a month ago). He has ruled out PBC and PSC or even formal PBC/AIH overlap from the results of the MRI, biopsy and numerous blood tests as all the tests for PBC were negative.

He has therefore started me on ursodeoxycholic acid (urso) as he thinks that would help keep the readings down and prevent further damage. Having read that it had a really good side effect profile I was very optimistic I would be fine. I thought I would start on half a dose for a day or so just to get my body into it. It is now 2 weeks later and I am still on half the dose. I feel sick most of the time and have bad headaches most days.

I know I need to stick at it but I wondered if anyone who has taken it (I think a few people here have) has any hints for me to try. I currently take it twice a day with my breakfast and evening meal as recommended by the pharmacist at the hospital.

On the plus side it clearly has a constipating effect on me which balances out the laxative effect of the CellCept and I no longer need any Imodium tablets. So every cloud has a silver lining doesn't it?

Any ideas?

Ann
Posted 10/12/2013 9:33 PM (GMT 0)
Tell me how it works for you. I had PSC and PBC ruled out but they still wonder if something was messing with bile ducts. I might have to keep urso in mind and bring it up it up if they keep talking about it.
Posted 10/13/2013 12:58 AM (GMT 0)
Had a transplant 4 years back. I take 300 mg. of ursodiol twice a day. No side effects that I'm aware of. I try to eat prior to taking my meds, but in the morning miss breakfast about twice a week. No problems when I don't eat, either. You're not supposed to eat any dairy products an hour before taking urso and within an hour after. Maybe that's the problem.
Posted 10/13/2013 1:17 AM (GMT 0)
Ann, is ursodeoxycholic acid the same thing as Ursodiol? I don't know if Dany is around this weekend, but I will alert her to your post and maybe she will have some input. Be sure to mention these side effects to your hep doc. Maybe you cannot tolerate it for some reason.

Hugs,
Connie
Posted 10/13/2013 1:34 AM (GMT 0)
It's the same thing, according to the FDA. It says that several other meds can cause problems if you take them with urso. Antacids are one.
Posted 10/13/2013 1:51 AM (GMT 0)
Thanks, David!

Hugs,
Connie
Posted 10/13/2013 3:20 AM (GMT 0)
I belong to a PBC mailing list and some people on it have problems with ursodiol. The consensus there is that the problem isn't the ursodiol but rather the fillers in some brands, so you might want to ask your pharmacist to order another brand for you.
If you e-mail me I will send you the name of the mailing list. Somebody there might be able to suggest a good brand to try.
Posted 10/13/2013 7:06 AM (GMT 0)
Thanks everyone.

We have often have different brands and terminology here in the UK so sorry if I confused people - the brand I am taking at the moment is Ursofalk. I will consider asking the hep to prescribe me a specific different brand. (Docs here usually prescribe generically to start with and only switch to prescribing a specific brand in certain circumstances - like a reaction or if brands aren't interchangeable chemically). I am currently taking 250mg twice a day but the full dose would be 500mg twice a day.

ksport - thanks for the offer - but I have been in touch with the PBC organisation here and have the brand names. Ironically the one that people seem to have the least problems with is the one I am on!

David - thanks for the hint to try taking it at a different time to dairy - I will try that. No one had mentioned that and as I take it with breakfast I am eating dairy at the same time as taking the tablet at the moment. The only thing in the leaflet really is not to take it with antacids - and I don't take any of those.

I am seeing my GP tomorrow and will see if she can give me something for the sickness and headaches. The consensus from the PBC people is that I need to give it at least 8 weeks to settle down (yikes!). And I will email my hep and let him know what is happening. I want to stick at it if I can as most people seem to tolerate it very well and if I don't get on with the urso - or it doesn't work - then the only alternative is steroids long term. Whilst the hep is talking about budesonide rather than pred it still is something I want to avoid if I can as I get side effects from bud as well.

Mind you the good news from all the testing over the summer is that the biopsy showed no cirrhosis even though I have been told for 5 years that I 'almost certainly' had it based on ultrasound results. So even more incentive to find something to keep the ongoing inflammation in check.


Ann
Posted 10/13/2013 2:25 PM (GMT 0)
Ann,
As we had discussed before...I haven't any side effects from the Urso. I was hoping you wouldn't either if they had decided to put you on it:(.
As ksport suggested, it could be one of the excipients (fillers). I don't think you'd need a new Rx unless you had to go to the original brand and not a generic. Ask the pharmacist first if they could order from a different generic company.
I am lucky in that I pop my handful of meds and vitamins together and they all get along in my gut regardless of what I eat. The only one that causes upset is aza on an empty stomach.
This is the great thing about support groups...so many different experiences that you gain so much more insight from :). Sorry I couldn't be more helpful.
Good luck tomorrow!
Posted 10/13/2013 3:58 PM (GMT 0)
Thanks Dany. I had been thinking positive as well - or at least hoping it would ease off after a few days.

Different country so different systems on prescriptions. It just works in a completely different way which I won't bore you with! So in this instance I would need a new one.

Ann
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