I take Ursodeoxycholic Acid for PBC does an... - PBC Foundation
I take Ursodeoxycholic Acid for PBC does anyone else?
Hi! There are several discussions on this drug. I did a copy/paste of Ursodeoxycholic Acid up in our "search" space and found all the comments. Might want to try that. A lot of different situations are discussed there. -
PS -
I was not trying to be a "smart butt" by my comment above. It was just a way to get immediate answers. -
I'm not sure what the difference is between the UDCA and Ursodiol, which is what I have been taking since Sept. '07. I take 900mg once/day. Guess I'll have to do some more research. -
Thanx Tumbleweed41. I've also been trying to find out what other drugs there are. I was diagnosed in July 2008 and my sister in November of the same year. She is on a different drug but I don't know the name of it. She no longer bothers with me so I can't ask her. Keep meaning to ask my GP or one of my Consultants but I forget. That was why I was asking about other drugs. Ursodeoxycholic Acid - I've learnt to say and spell it so figure I should use it ( - hasn't steadied my LFTs - these have been very high from first diagnosis. (probably before that). I was at hosp on 3 May and they took more blood then I got a letter to go back on 16 May for another liver scan. They are unsure if one of the bile ducts is blocked or if there is a growth in it. At the min have to sleep propped up as I would be sick otherwise. I also have, Arthritis; Asthma; Depression; Fibromyalgia; Hiatus Hernia; Insomnia; Migraine; Pancreatitis; PBC; Raynauds; Reflux; Scleroderma; Sciatica; Sjogren's Syndrome and Telgantieasitis - think that's how its spelt and think that's all. I often wonder that not only could all those conditions be working against each other but also the medication for same. Still, hopefully know more after this liver scan. Thanx for your help. Regards, ( x
Ursodeoxycholic Acid is the drug that almost everyone that has PBC takes x
I was diagnosed with PBC in July 2008 and my sister was diagnosed in November of the same year, with PBC. She on a completely different drug but I don't know the name of it. Hence the question! Just trying to find out what the drug is and if anyone else is taking it. I would ask my sister but she doesn't bother with me so that's why I was trying to find out on this forum.
I take 3 a day and have done so for 12 years. Since I started with Urso I have not had a night of sickness so am sure it has helped. It is the only thing I take.x
Hello Maggs3petts.
I think as Trish-W says, you'll find everyone with PBC takes urso.
I did a bit of snooping in medical reference books as well as online in the 6mths before I got diagnosed with PBC (2010) and thouight I may have PBC but hoped hadn't. I never mentioned it to the doctor as the blood tests continued and then the scan.
When I got a call from the GP surgery 2mths after having the antibodies test at the hospital asking me to go in to see GP I asked what medication the GP was going to give me a script for so I knew straightaway when she rambled off ursodeoxycholic acid that I was going to be diagnosed with PBC.
I have found that I can say ursodeoxycholic acid rather fluently these days and find myself correcting the GPs and nurses but at the same time know they don't really have a clue about PBC otherwise they'd use what is apparently the new terminology of 'urso' these days. Previously it was known as UCDA I have found.
As I stated to Trish-W, not everyone is on the same drug. I was diagnosed with PBC in July 2008 and my sister in November 2008. She is on a totally different drug but I can't find anything about it. I would ask her but she doesn't bother with me so that was why I was asking if anyone was on a different drug to Ursodeoxycholic Acid. Took me a while to spell it and say it so I figure it I made the effort so I might as well use it, though the GPs/Medical Secretaries/Consultants/Nurses and the Chemist normally just call it Urso.
Hi,
I have PBC but do not take URSO. I seem to be in the minority here. I was diagnosed with "Suspected PBC" in Feb 2011 after tests for muscle, joint pain, tiredness, dry eyes and severe migraines that have escalated out of control. I also have gallstones. I am AMA positive and tested positive for the M2 antibody which my Gastro Consultant said puts me at 99% positive for PBC. He said no Urso until the LFT's show an increase or until I itch. Not sure if this is the best course of action as I understood Urso could poss delay the progression of PBC. Any comments welcome.
Hiya Hopesprings
My Consultants have told me that there is no certainty that Ursodeoxycholic Acid works on everyone. But they feel its better to try something that might work for me than not to try. I think its like everything really, what works for one person won't automatically work for someone else. I agreed to take it because I'd sooner take something that might slow the progress of PBC than not take it and be told years later, "If you'd just taken the UDCA .......... But that's only my opinion. My sister is on another drug - its not UDCA or Ursodoil but I don't know the name. She no longer bothers with me so that's why I was just checking if anyone else is on anything other than those two drugs. I was diagnosed in July 2008 and since Christmas have been having terrible pain. I've had loads of blood tests done and at least 2 more liver scans. I was at the hospital last week and they took more blood so got a letter on Thursday for an appt on Wed (16 May) for another liver scan. Bet they could paper the walls of the hospitals with all the pix of my liver (:-).
I also had positive AMA and the M2 antibody and was perscribed Urso 300 mg 4 tablets daily 2 in the am and 2 in the pm I take that in conjunction of 2000 mg of Milk Thisle and 1000 of vit D. I am symptom free but have had hep C since the early 80's this is just a natural progression of that disease. May I also say that other than elevated liver enzymes I would not even know I had either disease.
I was dx Jan. 2011. +AMA, elevated LFT's, biopsy(Dec. 2011) showed stage 3. Dr. offered URSO however I declined. After 16 month of daily research I have yet to find conclusive evidence that URSO delays progression of PBC.
I believe that because doctors don't have any other treatment they keep doing what was done before......what's the harm?
To me that was the same thinking with hormone replacement therepy 30 years ago. So almost all women going through menapose were give HRT. And now years later a complete turn around.
For me, I need way more evidence that URSO delays progression and/or relieves symptoms.
Just my 2 cents.
HI
I am on Urso, my bloods are much improved and therefore I feel the 'toxins' are reduced, as the bile is moving more freely..... I hope that makes sense. I do not have any other symptoms, so can not say if it would help with the Itch etc. You are right it does not cure PBC, but as long as it makes my bloods more normal, I will take it.
Stay well.
lou
I am taking URSO since Nov 2011 and blood test have returned to NORMAL levels. This drug is very expensive so I am looking into taking a generic brand. What brand do you take?
hi i was dxt 3yrs ago this august, and i take 3 urso twice a day, have done from the start since then all my blood tests ect. has been good
Hi i have taken urso for the past 7 years which is the time i have had pbc which i take 3 times a day - taking urso does not cure pbc but does slow the progression, i find that it does not help with the itch which i have & somedays it can be good other days it can be quite bad - i would be able to cope with pbc if it was not for the dreaded itch as they call it, i also get the tiredness which i can cope with i just for a sleep for a couple of hours then i am fine afterwards x
I take URSO twice a day and have since diagnosis 31/2 years ago. I have tolerated it well and my bloods are now in the normal range.
I take urso 4 tab a day it has done nothing for the itch but has put my bloods back in the normal range .
Hi I have taken Urso before my transplant for PBC, and take it now Ive been re diagnosed with PBC again. The sickness probably due to other health problems I expect.
Hi Gleision
You've certainly been thru it, haven't you? Sorry to hear the PBC has returned. None of my Consultants told me that it could return if I had a transplant but a wee ring-binder book PBC Foundation sent me actually stated it could return. Thank you for sharing your experience. If you don't mind me asking how long did you have PBC before you had a transplant. Thanks again. (
I originally read in the time between waiting for the result of the antibodies test in 2010 that if it is suspected that one has PBC with the symptons and LFTs then that patient should start on urso even before it is diagnosed.
I think in my case - itch and at the time fatigued (latter has actually since vanished), elevated LFTs - then I should have been offered it as I had a 2mths wait for the results.
But I think it varies between Health Authorities or maybe it is that thing about money once again.........
HI was recently diagnosed with PBC, prescribed Urso capsules, gave me such terrible heartburn/acid reflux I haven't taken it since. Waiting for tablet form to arrive via mail order pharmacy (luckily I have medical insurance that covers drugs, here in US that is a major concern. On the other hand the Urso only costs me $6.66. Somehow I think that is a sign but don't know how to interpret that.) In any case my blood was AMA negative, my liver enzymes were ever so slightly elevated that I am not even at stage one yet, something like pre-stage one.The liver specialist wants me to take the URso but GP skeptical, seeing lupus specialist today. I don't have any symptoms except a generalized ache sometimes lower right side where gall bladder was removed. I also have SLE ,fibro, and a few other syndromes and diseases, so it is hard to tell what's what. I am also wondering about another drug for Urso because I don't know if I will be able to tolerate it without risking other serious problems from the acid reflux.
Hiya Madderio. Urso didn't cause me probs with like that cos I take Lanzaporole before my arthritis tablet. At hospital on 3rd May and they said I have a blocked bile duct so going this Wednesay for another liver scan. Don't know whether its a stone blocking the bile duct or a growth in it. So I'm thinking stone is preferable as they could laser it. Not sure what they do about a growth. No what you mean about having so much illness you're thinking is this because of this or that. (
Yes I take this tablet have any been on it for 2 weeks as I was only diagnosed then
hi all
i think urso is standard for pbc i have taken it for 13 yrs now i do not think there is any thing else for it ??it seems to hold the progression of the disease x
There is another drug, Plizzard. My sister takes it but I don't know the name. Since she no longer bothers with me I can't ask her. I'm going for another liver scan - 3rd this year, so I'll try and remember to ask them. (
I was diagnosed April 11 and prescribed Urso. Tests a week ago showed that liver enzymes levels have dropped considerably. I'll continue to take Urso for now. It doesn't help with the fatigue or itching unfortunately, at least not yet.
I was not looking for pbc when i had my hormone levels checked about 7 yrs ago.Blood test showed High trigycerides which started a two year search for answers as alcohol was not an issue. I was finally diagnosed with pbc by a liver biopsy about 5 yrs ago. Was told that urso was the cornerstone of prevention and slowing the disease. I take 500mg urso twice a day. tie it in with breakfast and evening meal. I have also taken supplements of milkthistle and globe artichoke. Also krill oil caps. So far i have been asymptomatic. However just lately have had a intermittent ache and feeling of heaviness more towards the back of right side under my ribcage.
have appointment with doctor to hopefully have an ultrasound and usual blood tests. see what happens. thanks to everyone for sharing. it helps us all.
I was told, last year, that I had a stone blocking my bile duct but as it wasn't too big it would most likely dissolve but it hasn't. Had another liver scan a couple of months ago showed its bigger so now they're not sure if its stone and said it could be a growth. I'm hoping its a stone and they can laser it. I was worried about that but my friend from day centre says he's had a growth in his bile duct for a while and hosp just keep scanning it to measure how big its grown. Had another liver scan last week so just waiting to hear from them what the verdict is. The waiting's the worst I think. Not sure this has helped anyone, though. (
I also take Urso, it is called Ursofalk here in Australia....I have been on it since 1993.
Hi Doreen. Sometimes I get Ursofalk - think its a bran name too cos it is Ursodeoxycholic acid - took me ages to learn how to spell it so I always use it, haha. The reason I was asking is that my sister was diagnosed with it a few months after me and she's on a different drug, she doesn't bother with me - she wishes I was dead - so I can't ask her what it is. However, at the time of her diagnosis she told me she wasn't on Urso so just wondered if anyone else is on whatever she's on. I have cousins in Adelaide, Perth, Melbourne and Darwin - well an island of Darwin. Thanx for taking the time to post. All the best, Maggs ( x
i have been taking ursodeoxycholic acid for for about 14 yrs for pbc..
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