Side effects of urso ....do you keep going ? - PBC Foundation

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Side effects of urso ....do you keep going ?

Cathycomehome
Cathycomehome

Hi guys, hope everyone keeping well ?

I was diagnosed last October 2019 with pbc but only started this week on urso ..

My bloods are above normal but come down slightly from last year ....with covid I have only been communicating by letter with the consultant and he started me on urso 250 x3 this week ....

I have read about the side effects and the non responding but was hoping to keep going till blood test in January ...unfortunately today I have really bad nausea / tummy probs and feel washed out ....do you still carry on like this or admit defeat !!!

Sorry to moan .....many thanks xx

31 Replies
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Too early to admit defeat!Do you take your urso after food? Have you tried different ways to take them?

It suits me to take all 3 after breakfast, others will split them over the day. Some will take all 3 at night. Experiment to see how you can take them without problems. Hopefully you can find a way that works for you.

Cathycomehome
Cathycomehome in reply to Oidra

Thank you Oidra... you are right it is too early but not sure how long you continue if you have these side effects ...does it mean your body isn't responding ? ....I take them with food 3 times a day and was OK the first day ....xx

Hi there, I take mine all just before bed and can’t say I have any problems. Iv been classed as a nonreponder since starting taking them in 2013 but still take them as advised by Hepatolagist as they help the bile to keep going through the liver.

Thanks Kimphoebe ..... I think I would feel confident in taking the meds, had I seen a consultant face to face .....I thought that side effects meant allergy and you should stop taking them ......it still confusing to me a year later ....keep well xx

It can be hard to tell apart side effects and allergies. I was told it's only an allergy if your immune system gets involved. Stomach issues and tiredness are side effects that will hopefully settle. If not, you may need to talk to your doctor about anything you can do to minimise them. I'm on a high dose of urso, so I split them into one dose with lunch and one dose with dinner.

Urso is important, if I'd have started them a few years ago I wouldn't have cirrhosis now. Please keep going and let us know how you get on.

Hells456 ....thank you for your reply ....we are all on this journey together at different stages ....the info on this site is invaluable ....take care xx

Chumito
Chumito in reply to kimphoebe

Wow interesting. I am also a non responder, after 3 years of use my doc suspended Urso. It’s about my second week with out it.

When I started taking urso, I was told to begin with a fraction of the dose, then slowly increase in order to give my body time to adjust. I did have side effects initially (headache, lethargy, almost flu-like symptoms without the flu), but by the time I worked up to a full dose (3-4 weeks), I actually felt better than pre-urso. I'm positive I would have felt worse if I had been told to start with the full dose from the beginning. Maybe ask your doctor if you can back up and start over at a lower dose, then work up.

Many thanks Periwinkle88 ....I will phone my consultant this week but I think I maybe on a lower dose at 250 x3 ? ......keep well xx

That's slightly low, yes, but it's weight dependent. I think I started at 900 mg., 3 - 300 mg. capsules per day. However, in order to titrate up, I only took maybe a half of one capsule for a few days, then a whole capsule for a few days, then a capsule and a half for a few days, etc., until I got to the full dose of three capsules. I now do 500 mg. tablets, but they are scored so it would be easy to cut one in half. Hope that explanation helps. Good luck!

I’m an urso responder and I started taking it in 2016. At first I had terrible tummy problems which makes you feel washed out and when combined with fatigue it is very hard to cope with. I now take mine in 3 doses with my meals over the day and I’m much better, my Dr said he didn’t mind how I took it as long as I had the daily dose he prescribed. My bloods have been “normal” for over 2 years and I only get problems if I forget to take my urso and have to double up the doses for the day! Keep going and hopefully it will be worth it.

That is such a reassuring reply Keep-smiling , I felt all my pbc symptoms came in one day after taking the meds ...fatigue, dry eyes, tummy ...then the panic sets in ...I want to keep going till my blood test in January and is reassuring it's not just me ....thank you xx

Hi, I’m so sorry you’re having such a tough time. I had quite a strong reaction to taking Ursodeoxycholic acid and found it really difficult to be with, quite distressing actually. What helped me to continue was knowing that the side effects could be temporary, that it would take many months for a consultant to establish if I were a responder or not but that being a responder would have a significant impact on the impact of PBC on me long term. For me, the side effects (which were a severe, very painful, prickling, under my skin and bloating/wind) did ease over time and eventually I was lucky enough to be deemed a responder so I was really glad I persevered through the tough times. If you can share how you’re feeling with friends and family do. I used to go for walks and talks (and crying) with different friends and I also called the PBC foundation. Their care and knowledgeable support was invaluable. I highly recommend contacting them. I also changed my diet to eating less processed foods, sugar, etc and increased things that seemed to be better for my liver.I know everybody’s Journey with PBC is different and I really hope yours gets easier.

With my very best wishes, Cx

Thank you for taking the time to reply Chrisprio ......it's feels so lonely on this journey until you find others going through the same and hopefully there maybe light at the end of it .....keep well xx

Early days to tell what’s going on. If your worried try calling the PBC foundation I called them last week and found it really helpful. I was told that they hold a meeting on Facebook every Thursday at 2 pm where you can type questions and the specialist will answer them for you. It was really interesting to watch live. Maybe give either a go I’m sure you will get some advice. Good luck

Cathycomehome
Cathycomehome in reply to Biddyb

Brilliant idea.... Thank you xx

Don't give up yet! For some the side effects are worse at the beginning, and things get better after the first few weeks. It really is worth persevering if at all possible, because being an Urso responder is the best situation to be in.

Cathycomehome
Cathycomehome in reply to Kakey

Thanks Kakey .....I will try to ...take care xx

Hang in there.....it should get better. I was diagnosed June 2019 and started urso right away. By the end of July 2019 I was on my face with headaches, dizziness, nausea, diarrhea, stomach pain, back pain, joint pain - I had to go to the hospital and there was no explanation for anything. My GP started seeing me regularly as he put me on disability and all the symptoms I felt were listed as side effects to Urso. My GP couldn’t stress enough to me that I need urso - responder or not. I was on disability for 7 months and with trial and error on diet, going for regular walks, avoiding over exertion, sleeping well and less stress I have been able to manage much better.

Unfortunately my specialist has deemed me a non-responder after all that and has submitted paperwork to start Ocaliva but I still have to take urso.

But again, hang in there. My GP said urso is proven to slow progression and despite the side effects it’s a better path than a transplant.

If you can start with changing up your diet - no processed food or preservatives, low sodium, low sugar, low fat. Lots of whole or homemade foods, fruits and vegetables. This helped me a lot and eased many of the symptoms I was experiencing.

Good luck to you. ❤️

Many thanks for your reply Katienharley ....it is such a comfort to know I'm not imagining all this ....my family think I have anxiety , but the symptoms feel very real to me .....I hope to at least get to my blood test in January to see if I am a responder ......keep well xx

I started URSO 3 weeks ago and had horrible side effects. From posting on different PBC FB pages I learned that some people have reactions to some brands of URSO. I was on the pink and white capsules AN 1540 and felt horrible. I asked the doctor to change my prescription to the 500mg tablet and feel much better. Somehow the P 413 white tablets are much easier for me to tolerate. So far, I have been on them 5 days without side effects. I hope you feel better - I felt miserable until 5 days ago.

Cathycomehome
Cathycomehome in reply to Anima9

Hi Anima9 , thanks for your kind reply......I'm on cholurso tablets but trying hard to keep going ..... Not as bad as last Saturday , so fingers crossed ...pleased you are feeling better ...we have obviously started this treatment at similar times ......keep well xx

Anima9
Anima9 in reply to Cathycomehome

Thank you. I hope you feel better.

Hi I take 1500mg of urso and take all in a morning after breakfast At first I was nausea and still get it a little but your body will adjust to it try rest and listen to your body but keep fighting x

Thanks Janine541.....I have been advise to just take one tablet and then build it up to 3 ...xx

I had the same problem when I started the Urso. Dr gave me Zofran & it helped & it helped with nausea. Good luck.

Thanks Tinkerbell73 .....I get quite panic stricken with the nausea which makes it worse ! !!!! Xx

I definitely understand. Anytime I had to take the medicine my anxiety would build up. The Zofran was a huge help. I have a standing prescription. I take it with the medicine . I don't have to take it as often now. It took a couple of months for my body to adjust to the Urso.

You have given me a lot of confidence Tinkerbell to carry on with the meds ...I am taking just one tablet a day ( same side effects as taking 3 ) and will start when I feel ready to up the dose ....learning that I'm not alone with these weird side effects ...thank you ....keep well xx

Hello, In my case I was diagnosed in 2017, started Urso right away. Using up to a 1000 ml x day. I eventually got used to the side affects. About 3 weeks ago, my new doctor, a very specialLized hepatic doc, who i went to see because of the itiching suspended Urso for me. Just like that. We are doing a clinical try out or something like that. Stay strong. And remember, we are all different and our treatment in someway ends up being unique. I’ll have my blood tests in 3 weeks and see what happens without the Urso.

Wow ....that is interesting .....we are all different but somehow gives me comfort to know some of us are experiencing the same problems and dealing with them ....thank you , keep well xx

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