Urso reduction.

[Weetab]

Urso reduction hi everyone Just wondering if anyone can advise me .I have had pbc for a number of years and although my weight is 11 stone have only been on 600 mgs of urso .Just had my annual phone call from consultant who has told me to reduce urso to 300 mgs daily because my bloods are showing normal .Has anyone else had their urso reduced for this reason ? I would be grateful for any replies .

[KimRenee]

Hi, from my experience the only time my hepatologist increased or reduced my Urso was only due to weight gain or loss. The dosage is calculated by your weight, not by your liver function test. (Note: he is the head of the Hepatology Center at KU Medical Center) He explained to me that even though my numbers are perfect now, I will still need to be on Urso for the rest of my life. He said my numbers are good because of URSO and weight loss. I hope this helps you figure out what to do.

[KimRenee in reply to KimRenee]

Also, I weigh 138 pounds or nine stones and I take 600 mg in the morning and 300 mg at bedtime. Good luck to you, if you ever have any more questions I’d be happy to try to answer them.

[Weetab in reply to KimRenee]

Thank you so much Kim for your kind response.I am really worried about this so I will try to contact the consultant to query this with him .Once again thank you .

[Waterbabe3174]

Hi Weetab, my bloods are in the normal range now after a few years on Urso, but my consultant wants me to increase my dosage due to weight gain over the last year. I’ve also been told Urso is for life. I would question this suggested reduction. Good luck.

[butterflyEi]

I have never heard of this. The standard advise is to follow the guidance on the Patient Information Leaflet (PIL) which is 12-16 mg/kg so for your weight it would be around a dose of 1000 mgs (so similar to me I take 4X250 each day and am about the same weight)

If you are a member of the PBC Foundation this is a question that could be put forward on their weekly Q&A with specialists. Yesterday it was Professor Jones who kindly gave over an hour of his time answering questions. Their web site will give you a link to the next Q&A but it can also be found on FaceBook at 1400hours GMT each Thursday. Questions can be emailed in advance for easier use of the specialist's time

The PBC Foundation are also due to publish their Bear Facts Magazine which in this issue will be a chart to aid service users in working out how much URSO to take as per the guidelines.

[Candy12]

Kim Renee is right once your on URSO it’s for life, (unless you can’t tolerate it) but you should also be on the correct dose for your weight. ( yours look a little low I’am 69kg and take 2x500mg a day)

Its in the patient leaflet what you should take for pbc. Its recommended at between 13/15 mg per kg of weight, per day. So I would get it checked out before lowering it, I’d also ask why your on a slightly lower dose. It maybe your consultant considers that optimal for you, as we are all different. However, I think it’s very important you check it out, so you can make an informed choice about what’s right.

I would suggest you contact the PBC foundation they will guide you through getting the right treatment. Call the helpline they support this site on health unlocked their number is on the home page or you can find it in the web link.

pbcfoundation.org.uk/

[Huggy7614]

Pre transplant I was on 1250mg of Urso, and initially post transplant it was stopped.

About 6 months after I was reintroduced onto Urso, but at a lower dosage - 750mg. My understanding was this was a preventative measure, to hold pbc from coming back to damage my nice new shiny liver!!!

Andy

[magst]

Im around 10 stone and I'm on 500mg day because I wanted to reduce it. They started me on 1000 but after 3 months my bloods got better but my hair was falling. I reduced to 500 and bloods are still fine after 2 years. In my view less medicine is better if it works. I'd be happy to try even lower dose but the doctor was not keen even on the 500 and was telling me that best results are on 1000.

I'm 47 y and I hope I will not be taking urso for life. Body can heal.

Maybe your doctor has other reasons to recommend lower dose. Perhaps other medications, age etc.

[Kakey in reply to magst]

I hope no one reading this would consider following this example, it's really not the way to go. Magst, I urge you to listen to your doctor, and reconsider your approach.

[JBH2000 in reply to Kakey]

kakey- I agree with you. When you go on Urso, it’s for life. People on this forum must understand your doctor is still your # go to!I understand we all like to talk about different symptoms from PBC and reactions from meds- but we are not the doctors. Always check back with your physician for your final answers.

[ninjagirlwebb in reply to Kakey]

I agree. PBC is an autoimmune disease where your own antibodies are attacking the microscopic biliary tracts inside the liver. Your body wont heal itself. The reality is this is not curable at this time and the only way to protect the liver is taking urso every single day of your life.

Everyone should follow their doctor’s guidance but if it conflicts with general research and guidance by all means, question your doctor and if it doesnt make sense, go to another doctor for a 2nd opinion.

[Gioielli5]

Agree with all other comments. Taking Ursodeoxycholic is not dependent on your levels but on the fact that you have PBC and will have for life. The amount you need is determined by your weight. Definitely question this decision.

[LindaButler191155]

The only time Urso should be increased or reduced is due to weight gain or loss. At 11 stone you should be taking 1000mg of Urso. It would be helpful for you to contact the PBC Foundation to discuss this further.

[Larrysgirl]

Hello Weetab~ I too believe that the urso dosage is determined by weight. I am 124 pounds (8.85 stone) and take 250 mg 3 times a day (750mg). Only being diagnosed about a year ago, my levels are still a little high but my Dr. said I am at the max dosage for my weight. She even got the opinion of another hep dr. and he said the same thing. There was discussion of adding Oclavia, but it's pros didn't outweigh the cons for me. The consult dr. did say there were other meds being studied right now that are better than oclavia and will be available in about 4 years. Maybe ask for a second opinion or contact the PBC foundation as mentioned by others

Have a fabulous weekend, Anni

[KimRenee]

You are absolutely welcome. It’s comforting to know others who have PBC are there to listen. Good health to you!

[Prades]

Hello, I would talk to the pbc foundation for their advice on how to approach this with your consultant. I used to live in France and Spain where I was first diagnosed and treated with the correct doses of Ursodeoxycholic acid. When I first saw a doctor in England when I returned they did a blood rest. They told me to stop taking Urso as my lft etc were all in range! I laughed my head off and quickly educated the doctor on the treatment of pbc. Luckily, I changed doctors when I moved. I always work my dose out, especially as during the lockdown I didn’t have any contact with a doctor or consultant and lost 20kg. I always let the surgery know this. Its easy to know your dose. Doses is 13 to 15 mg per kilo of weight, always work out with 15mg. E.g. I weigh 80 kg and take Ursofalk 250mg - so - 80 x 15 = 1,200 divided by 250 = 4.8. So I take 5 tablets a day. You need to get advice on this sooner rather than later. Good luck.

[zinchunter]

I would say "Lucky you!" Probably not in line with the majority, I would recommend going with the GP reduction as my belief is that the less artificial drugs the better. HOWEVER I would not reduce unless you have two good lft results - one can be a rogue. AND continue regular tests. Best wishes.

[Beatrice110924]

HiI've been diagnosed with PBC for 2.5 yrs and weigh around 8st 10 lbs.

I take 1000 mg a day but 2 yrs ago I had a virus and lost 1 stone. I mentioned this to my GP and he lowered the dose but at my next blood test my levels had gone up considerably. My Gastro Dr said it was because I had lowered the dose and put me back on 1000 again.

I was stage one but have now gone up to stage 2 although my lft's have been good recently. I think everyone's different but I wouldn't consult my GP again as most of them don't know enough about PBC.

I'll stick to the experts in future.

[Carole87]

Hi Weetab I've read through all replies and agree with all but two I was diagnosed in 2006 with PBC and urso is for life I take a 1000mg a day I'm around 80kg my consultant specialises in PBC so I trust his word when it comes to this illness my lft test come back good all the time but I can't stop taking urso no matter what. Get a second opinion. Hope this and all the others help you decide and do become a member of the PBC Foundation.

[Stub007]

No reduction here: 500 mgs 2 X daily for three years with no suggestion of reducing the dosage, while bloodwork remains very good.Good luck!

Don

[Colryan]

Hi Colleen here from Australia. I am only 58 kgs and l am on 750mgs of urso for 15. years .

No l haven't heard of it being reduced. If the LFT come down good it is working.

My liver functions go up and down .

Hope this helps. X