Ursofalk reassurance needed

[lauralocks123]

Hi guys, I have been on ursofalk for 2 weeks now and been taking 3 capsules at night, 750mg total. It's causing me to have bad cramping and loose stools/ diarrhea every morning, sometimes during the day aswell. I was on it when I was pregnant and took 1 tablet with each meal, so 3 times a day at spaces intervals. The consultant did ask this time that I take 3 at night but I think it's too much for my body to handle so thinking of switching to 3 over the course of the day. Can anyone give me some reassurance that these side effects don't last long term? Also interested to hear how everyone else takes their ursofalk?

[Hidden]

Hello lauralocks123.

There does seem to be initial side-effects on starting the urso. I was diagnosed December 2010 and started taking 600mgs of a brand at the time known as Urdox (tablets were in 300mgs). My doctor was going to prescribe the urso as 4 x 150mgs daily but I didn't want to take 4 times a day. (I've never been one for taking any medications and hadn't at the time in over a decade (except the odd paracetamol now and then) so was given twice daily.)

I started taking mine tablet with breakfast and then the 2nd around 9p.m. I've experimented over the last (almost) 6 years and found for me it is best taken twice a day. I did read that it doesn't seem to matter when we take the urso, personal choice. I did try it all in one go with breakfast awhile ago but I started itching badly a couple hours later (something I do not do presently) and know it was due to the urso. (I stated itching early 2010, it has altered over time with urso and tends to be confined to later night and during the night.)

I started with a bit of bloating, heartburn and I did think the itch was worse in the early days of taking urso. For me I started experiencing constipation which I never had prior.

I think perhaps you should take the urso spaced out especially in the early days, then take all at once if you want as time passes if it feels right. I think with needing bile when we eat, especially for breaking up of fats, in my mind it is best taking the urso at intervals so we have in the system. I've read various ways of taking the urso on patient info leaflets (since December 2010 I've had 4 different types of urso, not due to choice, the chemist and also the fact that one seemed to go generic at a later date (had no problems at all really) and the leaflets seem to vary slightly but it seems the norm in PBC for a patient to start spaced out and then at a later date you can take all at once, usually night time recommended. I think again it is personal choice.

I think it definitely needs to be taken with food. I find that if I've not had enough to eat I can get heartburn after so I tend to have food prior.

The side-effects do tend to vanish, they did within a few months of starting the urso for me.

Diarrhoea can actually be one side-effect with the urso, it does state on the patient info leaflet. (If you've not got a leaflet, you can download one online to read if you know the manufacturer/pharma you tablets are.)

I think it is early days with the urso for you and I hope that the side-effects you are experiencing currently are only temporary as they were in my case. I think once you get your first bloods back after starting urso, it somehow changes things a lot, did for me.

[lauralocks123 in reply to Hidden]

Thanks for your detailed reply. Yeah I've never taken medication regularly. I know it's a known side effect but it's a horrible one. I have been a bit itchy too: eye lids strangely. Never normally itch. Today I am taking in spaced out. See what happens.

I'm also on a high dose of calcium and vitamin d which probably isn't helping.

Thanks again!

[Hidden in reply to lauralocks123]

Hello lauralocks123.

I don't think calcium and vit d will be any problem with the urso. I occasionally take a calcium and vit d tablet myself as odd times if I feel heartburn I find it works a treat. I opt for these as I noticed reading the bottle label on calcium with vit d and our English Rennie tablets for indigestion that they are the same except the latter has certain flavours, etc in them. Can't see point in that, plus the calcium and vit d from supermarket are much cheaper.

I thought the itch was a bit more severe in the early days of taking urso but over time for me the itch has altered which I am glad of as back in 2010 pre-diagnosis I was itching quite severely 24hrs a day (reason I went to see a doctor). I am hoping that the PBC never alters in that I itch like that again. I find some nights it can be a bit overbearing itching but it is definitely not like it was back in 2010 and part of 2011.

[ginam in reply to lauralocks123]

I too get itchy on the rims of my eyelids, before I started on Urso. I haven't been too itchy lately. I get sun when ever I can. I noticed the day after eating a hot dog I was itchy on the tops of my feet and toes so I try not to eat processed foods.

As far as the Urso, my gastro who doesn't think PBC is such a big deal, precsribed it for me. I waited taking it until I saw a hepatologist. He told me not to take it because it causes weight gain. I've since got a letter from him that he has left the practice. All of the literature I read says how it prolongs life. I started on it 500mg 2x/day and had terrible gas pains and diarrhea. Also increased hunger. I backed off to 1/2 tablet at night until diarrhea subsided. I am now going to try 1/2 tablet in the morning to see what happens.

Good luck to you.

[lauralocks123]

Thanks for your reply again. Yes I myself had the unbearable itch when I was pregnant but since then have not itched...then started taking Ursofalk and I'm itching again but not unbearably.

[moepag]

I take 1 Urso capsule 3x per day. My doctor said it was best to space then out IF you are taking them but find many forget throughout the day. She indicated it seems easier to tolerate when spaced out. I happen to work from home so take all 3 out in the morning and leave them on my windowsill in kitchen. I found I needed the visual reminder or I would often forget. At least at 3:00 pm if there are still 2 capsules out it's a reminder to take one. (I guess I do have brain fog!!) After some brief initial stomach upset I have no problems with it over 2 years in. I also take a vitamin d supplement every morning with no ill effects.

[Bonnieanne54]

I have been on Urso 21 years. I take two in am and I've in pm. 50,000 units vitamin d once a week and vitamin a

My blood is checked every three months. So far so good enzymes staying in 150-180 range.

Good luck