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PBC Foundation
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a bit nervous

just been precribed urso and also alendronic acid just wondering any comments of side effects while using them any advice would be so grateful before i start them thank you sadie xxxx

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hi sadie21. im new to urso tho thats all ive been prescribed.apparently my bloods arestill low but creeping up whatever that means.gonna ask for a print out next time i see specialist.been told to take 750mg ursofalk capsules and at mo struggling with that amount tho it seems that im in minority with that.most people seem to manage no probs.my first symptoms were uncomfortable bloating for two days then god awful diaorreah.lost half a stone in a week.also mild headache.with advice from forum restarted on one 250 mg capsule for a week then introduced next one but a month in still cant tolerate third.it makes me feel ill .i didnt really have pbc symptoms till starting urso.i hope you dont have any side effects- most people dont.best wishes.x

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Hi Sadie I started URSO in January and take 900mg once a day after my evening meal, I am lucky and have had no problems with it. Unable to comment re alendronic acid as I have not been prescribed it. Hope all goes well for you.

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Sadie, I've taken the both, I've been on ursodiol for 10 yrs, and was treated with Fosomax ( alendronic acid) for 11 yrs and Reclaspe by IV for 2 yrs. The fosomax will build stronger bones, but don't take it for too many years. It can cause the bones to become too dense and have a loss of blood supply, which results in broken femurs and jaw bone problems. My PC Dr. who is also a GYN, said she recommended her patients to be on it for 5yrs.

Fosomax is hard on the stomach and esophagus, so drink a full glass of water with it. Stay upright for at least 30 minutes to make sure it goes down well. The ursodiol didn't bother me until my Dr. upped my dose to 1500 mg. But I can take 1000 mg a day well enough with food. I also have to use Nexium for GERD.

Magnolia

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Hi sadie21

I take URSO but have not heard of the other. Only side effect I had which my consultant had pre-warned me of was diarrhoea. I was prescribed 2 x 250mg three times a day. He told me that this dosage at the beginning may cause diarrhoea and if it did to cut back to 1 x 250mg three times a day and gradually build it up over the next month...which it did. I added 1 extra 250mg tablet a week until I was on the full dose.

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Hello 'new to urso' sadie21.

Well on the whole it's notso bad. I only take urso, nothing else. Apparently when I was prescribed it I was informed on my first return visit after starting on urso 8wkis prior that it is 'pretty well tolerated'.

I did get some initial side-effects and did wonder prior to taking it, the words 'acid' at the end I think springs to mind. As expected I did get some heartburn and bloating for the first couple months but these vanished. I still think the trick with urso is to take it when you have had plenty to eat. I also thought the itch I still have was a bit worse in the first few months but that returned to as it was and over time has settled somewhat.

I didn't get diarrhoea but I did start to get constipated, something I never did prior to taking urso. That still comes and goes.

But on the whole my bloods are pretty good these days, 2 and half years on from starting urso.

I think it is a case of giving it a go to see as no other available treatments as yet and once you get a more positive blood reading you'll start to see things that bit differently.

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Hi. URSO can upset your digestive system until you get used to it. Personally I never had any problems with it. On the other hand Alendronic Acid is really hard on the stomach and can cause reflux, sickness etc...they usually start a patient on Alendronic Acid and if you cant tolerate it you can move on to other things.

If I was you I wouldnt start the two together. Take the URSO first and if thats all OK try the Alendronic Acid. That way if you feel rough you will know which one is causing it. URSO you need to try and get used to as there is no alternative treatment but the same doesn't apply with Alendronic Acid.

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What is Alendronic Acid?

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osteoporosis drug :o)

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It is a medicine to help build stronger bones, preventing osteoporosis.

Magnolia

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Was snooping on patient.co.uk a short time ago as this alendronic acid is on. It actually does state you have to take it before breakfast and with just plain water, nothing else. If on any other medications then take those about half hour after taking this one which does state it is a bone-building medication in use for osteoporosis as others have stated.

Apparently you have to stand up or sit down for at least 30mins after taking it, probably due to it being a form of acid.

Reading about it and myself not still being happy about having to take urso for the rest of my life, I think I'd pass on that one myself. I think I'll try and manage my own bones as I go along.

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Hi, I was on both but the alendronic acid made me feel dreadfull so I was put on protelos but have been called into the surgery this week and the said they are taking everyone off it as it can cause serious heart problems, so no idea where I go from here, I would prefer not to have the 6 months injections as I dont fancy being ill for 6 months if I have a reaction to it.

I also had the biophosphates injection that you can have every two weeks but I only got as far as having one and I wet myself before I could get to the loo and I am talking victoria falls here not just a dribble.

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HI Sadie21, I started Urso a week ago, haven't had any side effects at all, haven't heard of the other one though.

Puddles

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