Just been reading through few posts of people who have itch like myself and who when had doses increased found the itching increased. I am no longer on Urso and have to say I do not itch as much as I did in the ten yrs that I was on Urso. Unfortunately my Lfts have raised since coming off it but despite this I am doing and feeling great. I do still itch but I take Questran one sachet before and one sachet after breakfast and this keeps it more or less at bay during the day. Night time still bit of a nuisance and most nights it wakens me and i have to take another Questran or two in the night. I dont see my consultant until Jan 14 but I will be asking him if maybe someone could get some study going into the history of the use of Urso in PBC now that many patients have been on it for many yrs and what dose is best to keep the liver healthy. I wonder now if it was the increased dosage or some ingredient that is used in making the tablets I used to take that made me take horrendous itch that lasted a year (and was much like the year before I was dianosed) which lead to my going off it. I do now worry if my liver will deteriorate more quickly with not being on the Urso though having said all that I have felt much better in the past yr than I have felt in the 12yrs since diagnosis, 11 of which I was taking the Urso religiously, go figure!! Getting bloods done next week be interesting to see what story is re Lfts a year on from being off Urso. Will keep you all posted.
Does anyone on here think that maybe the do... - PBC Foundation
Does anyone on here think that maybe the dosage per kilo for Urso is wrong and needs to be reviewed by those who do that? I do.
Hi littlemo.
Interesting question. I have been on Urso for nearly 10 years since diagnosis at 38. The gastoenterologist I saw prior to my current Dr fiddled with the dose over a year or so as bloods were slowly deteriorating. I took as many as 8 x 250mg capsules for months - a total of 2gms , drastically exceeding the maximum recommended dose for me. This large dose made absolutely no difference at all to LFTS so eventually dose was reduced back .
My Dr believes I have become a non- responder to Urso although also thinks LFTS would be even worse without it ! In light of this he put me into the OCA trial which has shown favourable results in small studies. I am either on the placebo/trial drug not working as zero improvement in bloods. However, I guess my point is that we each have a unique disease trajectory and what is true for me may not be true for others. It would be interesting to know if others have been tried on high dose Urso with positive results.
Cheers from Down Under !
Karaliz.
Hi Karaliz lovely name by the way. Are you also still on the Urso and if so what dose?
Hi littlemo, thank you ! Yes, on 1gm of Urso, taken as 4x250mgs - consultant goes for upper recommended dose, rounded up. The trial is double blinded and is looking at Urso taken in conjuction with Obeticholic Acid - 3 arms. One placebo arm and 2 active arms - 5 &10mg.
Have been fortunate enough to escape the itch completely during this PBC journey.
Main symptom is fatigue. My Dr put me in the trial as liver biopsy revealed last year stage 3 fibrosis with deteriorating LFTs and Albumin but no other symptoms. It's a mystery isn't it !
Good to hear from you and keep well.
Karaliz
Thanks for the info Karaliz will be very interested to hear the outcome of this trial do you know when it ends? Sorry to hear that your Lfts and Albumin are deteriorating. How was your stage diagnosed was it via biopsy/fibroscan. Did consultant give you any idea on what this means in regards to how much longer your liver can last before possiblly becoming cirrhosed? Hope you dont mind my asking that.
Hi littlemo. The first stage of the trial ends at the end of this year when those on the placebo are removed with no further involvement. Those on the active arms continue for another 5 years I believe while the long term safety effects are studied. By the time the results are analysed etc it will be some years I suppose before the drug is available. Still, all trials are for the greater good and there has been precious little else for PBC on the horizon! I had a biopsy which staged the fibrosis at 3. I did also have a fibroscan but this is a bit of a blunt instrument when it comes to accuracy and really only revealed severe fibrosis and possible cirrhosis.
In fact there is no cirrhosis according to biopsy and certainly the doctors I have dealt with here in Melbourne are in favour of biopsy for its accuracy.
Of course I don't mind you asking ! This is the 64 million dollar question many of us would like the answer to ! When my LFTs deteriorated 2.5 years ago quite markedly and I had a lot of tests including MRI, USound etc plus biopsy, my consultant did say 5-10 years might be the longest my liver would last. However he says he really can't know for sure so I am employing positive thinking and imagining it will last much longer !! Here's to good health and a positive attitude for us all.
Karaliz
Thanks Karaliz its good to be informed am a firm beliver in positive thinking also and please God soon the brainy folks will find a cure for PBC that doesn't involve liver transplant. Take care stay happy and healthy. Keep us posted re if it turns out your on the real drug or placebo. Be interesting to see the finkdings of this trial.BFn.
Yes I have itched since before diagnosis but it has worsened with the urso or I think so anyway although my consultant thought the higher dosage would help? My skin feels like bugs are biting, it is also super sensitive now too. Any recommendations how to handle it because I'm struggling a fair bit a the moment.
Hi Lindz1 My skin also feel's as though I am being bitten it starts ti itch then a small dot appears really itchy then when I have scratched it it will start to bleed these come in different parts of my body just like a bug bite I have had all the lotion's for all kind of bite's from the doctor before I was diagnosed with PBC I also get the prickly itch as well this drive's me crazy I never keep still when this starts can you let me know if this bug bite feeling is the same as mine because I am convinced that some thing is on my skin biting it Take Care
Hi cavi yes itch sounds much the same to me, I was diagnosed with pbc about 1yr and half ago after I started medication the itch got a lot worse I did get the medication reduced and the questrian has helped lots but just recently had the urso dosage doubled because I came out in a itchy rash all over and lft's were raised now the itchs have gone crazy again. Damn the itch I've woken up so many times and my bed is covered with blood spots. Have they put you on questrian yet it really made a huge difference and only took a couple of days to work?
Also cavi I've found 100% cotton clothes and bedding helps too everything else just seems to irritate it more
Hi Lindz 1 I have been taking Questran Light 2 a day for 4 months now might try another one to see if this might help a lot on here take 3 or 4 but as you know they are horrid but I would take any thing to help the Itch as for the bedding mine is just the same and what I wear always spots of blood every were but do you get two kinds of itching one like a prickly itch which you get with PBC and this one like bug bites I have tried all the things for bed bugs scabies ,so is this to do with PBC as well sorry for repeating myself .
Hi Cavi and Lindz things I have found that helped my itch over the 11yrs since diagnosis are drinking plenty of water at least one to 2 litres a day helps to flush out the toxins I feel. Also I eat small and often (as heathily as possible) and never go over 3hrs without eating usually keep fruit in bag/car as find if go longer than this the itch starts. I try not to take too much caffeine or sugar particularily late in evening as prob like most my itch is worse at night. I do have to particular about fabrics I wear usually opt for 100% cotton and dont use / seldom use highly perfumed shower gels opting for sensitive skin formulas. I keep my skin well moisturised again find the dermatological ones like E45 lotion the best. I keep very active ( little choice mind you with a 6yr old son, 17yr old daugter, wonderful fiance and a part-time job to hold down! I find if am inactive for long period of time the itch will start too. I take Questran sachets one before and one after breakfasst really does keeep the itch to fairly mild levels all day. Someone on here recently mentioned the Rifampicin working brilliantly so maybe ask your consultant about this also. Also my consultant tried me on low dose Naltrexone which works fro some but sadly didnt work for me. Good luck to you both you have my total sympathy. I had written a few blogs on my experiences living with PBC past 12yrs but dont no where they have gone to the format on here has changed. Can anyone enlighten me to where my blogs and the list of archive of blogs have gone to I always found them very useful.???
Firstly, thank you for the question.
Thanks, too, to LittleMo for their great answer.
The appropriate dosage of Ursodeoxicholic Acid (also known as Urso or UCDA) is 13-15 mg of urso per kg of person. Whilst we are awaiting results of a recent survey, a preliminary look at the figures suggests the average dose (of those actually precribed Urso) is round about 8-9 mg, which is unsatisfactory on many levels.
We know that increasing the dose beyond that 13-15 mg per kg does not have any effect on LFTs or on symptoms.
Generally speaking, Urso isn't designed to alleviate symptoms and for those that this occurs, that seems to be a happy coincidence. Urso is designed to flush the bile from the liver allowing the liver to work more efficiently and to slow down the progress of any cell change within the liver.
If I can be of more assistance, please do get in touch with me.
Yours,
Robert.
Hello littlemo.
Well it seems that we all get different opinions with regards to urso and dosage. My hospital consultant letter dated Dec 2010 that I got a print-out of when the GP gave me the diagnose shortly after states 10mgs per kg body weight so I was rounded up to 60kg in weight (which is quite a few kilos over) and given 600mgs daily.
Maybe this hospital consultant starts on this figure and then progesses up perhaps or sees what results are being gotten from this. I know my LFTs did jump down within 2mths of starting urso and then they came down a bit further but the in the following 6mths during 2011 they started to climb a bit slowly but then after another 6mths they had started to drop once again. I've bounced a bit since starting urso but so far the LFTs haven't done a rapid climb and are way below what they originally were prior to starting on urso.
Interestingly tho' when I received print-outs of all the blood work I had done during 2010 (8 months of it) I did notice that in the period I was waiting to see the hosp consult on my first appt (very end Oct 2010) in the 3 months space between repeat bloods my LFTs had actually started to drop naturally.
I understand it slightly different from PBC Robert (sorry) and it seems there are conflicting opinions surrounding urso and how it fully works. I was informed that due to bile duct damage less bile would be flowing into the gallbladder to be released so as I see it, urso in tablet form is a sort of short cut to aid the break down of fat by bile given the urso is taken directly to the stomach. I know that used bile does travel via the bloodstream back into the liver to be reprocessed, some is 'discarded' but it does figure that the more flow then of bile via urso would somehow flush through the liver thus apparently aiding our system to better cope.
Of course I'm no scientist or medic as we all know but I do think that with a bile supplement as I call it as strictly speaking to me anyway, it's not exactly a drug, less stress on the liver would halt the progression of PBC.
With regards to itching, I don't think that it might be something that can just disappear when on urso unless our livers manage to repair sufficiently to cope to an almost normal level once again. I have resolved myself that I might never stop itching, just hope it doesn't get any worse as it is pretty irritable of a night as it is.
Thanks for that Peridot got my recent LFTs result today and sadly they are still very high and my Bilirubin is rising which I know is not good. A copy of them has been sent to my consultant who unfortunately I am not due to see until Jan but will wait and see what response is for him. Feel like have no choice but may need to go back on the Urso to prolong life of my liver trouble is if the itch returns to the horrendous levels it was my quality of life would be awful bit of a catch 22 situation. The irony is despite the LFTS being so bad I feel pretty good. Go figure as the Americans would say!!
Sorry to read that your levels are slowly rising at each repeat blood test. Yes I certainly agree there with regards to the Catch 22 situation.
I know I am taking the urso and still have the itch at night and some nights it does drive you mental especially if you find you can't sleep. I dread each night as I know certain parts of my body that are fine during the day suddenly become troublesome!
I am about to wrangle with the GP tomorrow when he rings me up at whatever time (from past experience it can take over an hour later from the scheduled time or like last yr., GP forgets to even ring!). I am one of the unfortunates who has now to have 150mg tablets and double up due to the recall of the 300mgs.
I had been getting 90 days supply since the 2mth of taking them (started urso Dec 2010) and apparently I can have only so many which I translated yest to about 6wks worth.
My argument is as you are currently experiencing, don't take the tablets, risk the LFTs starting to climb again and possibly other symptons of PBC coming out. I know we do have the choice whether or not to take the urso as there's no guarantees but for the ones who are taking it like me and aren't currently experiencing what you said you were prior to stopping them, I do think that as urso is generally for life there should be some leeway with the prescribing of these. After all it isn't a case we just pick them up and that is that, we do have to have bloods done at intervals otherwise a GP would be reluctant to dish out a prescription for urso without knowing what was going on (as we don't know ourselves. I can feel great and get a less than expected result and when I do feel under par get a good result).
All I can see is it is strictly down to money here. After all if we are taking the tablets continually, we are still using them but in money terms if one pays for them as I always have to, then the NHS are going to be reaping in more from them! Think I'll hot foot it over to Wales or Scotland, they receive theirs free!
Just been diagnosed with PBC
Seladelpar update
Gabapentine 
sorry for being dense but can you explain
