Urso

[Twinkle26]

Hi all how long after a positive AMA blood test Should you be taking the medication, and is everyone prescribed it?

Thanks.

[Hidden]

Hello Twinkle26.

I was diagnosed with PBC in Dec 2010. I had started itching not long into 2010. I saw a consultant at the hospital start of November that year and he took the antibodies blood test, the AMAs and also ANAs.

With at the time fatigue (don't have currently) and itching (still do, at night)m abnormal LFTs (liver function test) and GGT blood, along with what he said 'a high titre' of the AMAs (my ANA was negative) he gave diagnosis and I started on the urso as soon as my GP relayed the diagnosis from the consultant.

It seems the norm for patients with PBC who are symptomatic (that is with symptons of PBC) to be given urso but it seems to vary with a patient who is asymptomatic. Seems some are prescribed urso as they have been diagnosed with PBC and others who have normal bloods and no itching, etc aren't at the time but monitored. I once read about when one might start on urso in a PBC foundation 'Bear Facts', but still seems to crop up on this site, diagnosed with PBC and no urso at the time.

My own opinion here would be if I personally had normal bloods and no symptons but was informed I had PBC, I'd be very reluctant to start on it myself and would expect to have the bloods monitored for the day if it was to be when the bloods did start to go outside the normal range.

[Twinkle26 in reply to Hidden]

Thanks, I have lots of other symptoms, itching especially head, Underactive thyroid, aching muscles, tiredness very often, alopecia, sore eyes, stomach pains sometimes.

The doctor said I have pbc due to the positive AMA test. I see the hospital specialist next month but through reading a lot of the posts on here you all seem to be on the meds as soon as your diagnosed.

But thNks for your help.

[Hidden in reply to Twinkle26]

Hello again Twinkle26.

I am not sure but urso might just be one of the meds that has to be prescribed by a doctor above a GP. There are some. I know medications go by some traffic light system and only certain doctors can prescribe.

I know I had to endure really bad itching throughout 2010. I am in the UK and I do think the wheels of the NHS turn really slowly. I find it ridiculous that things seem to go backwards as opposed to forwards these days and in the days of new technology....?

I know back in the early 1980s I had to have a blood test at the GP surgery (routine follow-up after having a baby) and the GP just said to me that if I waited back in the Waiting Room the nurse would do one as back then nurses seemed to have appointments and also in-between they would do certain things as opposed to a patient returning to surgery at another time.

I know back in 2010 my GP only did one blood test there and then but the rest were all booked and for the following week. I think I could have gone to the hospital much sooner had the blood tests been done in a shorter timeframe.

I'd not worry about it as if your bloods were of a certain scale you'd probably have been seen sooner, I think this is one reason why it took time for myself in 2010. My bloods were abnormal but more than likely not considered appalling.

[teddybear7 in reply to Twinkle26]

Wasn't put on it till I'd seen the specialist honey x

[Twinkle26 in reply to teddybear7]

Thanks Teddybear7

I'm seeing specialist 2nd Feb. As I had January appt but had to postpone for friends funeral.

I was just confused as so many were put on urso as soon as dr was seen it seemed like but I suppose it was the specialist they had seen earlier.

Thank you.

[Twinkle26]

Thanks Peridot, I agree lots of changes, That was the days of sit and wait your turn not much appointment allocation. I have 4 sons only one at home now, he's 19 can't say helps much though. Sleeps most of his life and I'm the one with pbc?

I think I'm in a rut sort of, work part time but would prefer to stay home I can't handle the buses to and from work, I could be a professional hermit.

I'm worried about watching the diet as I have sweet tooth, can't take much fatty stuff and that's before the urso lol I'm overweight and 50 diabetic but holding off of taking the meds as I'm trying to lower it myself, but again I read that the PBC effects the levels too.

[tinypixie]

Hi, Twinkle, I was prescribed urso the minute the consultant saw my fibroscan results even though I didn't see him again for a month after that.

[Shine1]

Hello,

I was diagnosed with PBC and Urso was suggested as an option, Im not yet on it.

My LFT results had been very high and I had many other symptoms for years, but it was a biopsy that officially diagnosed it.

I may start on it, will discuss it when next see consultant. Perhaps its not been hurried as while I still have many symptoms, my blood test levels were high but have settled quite a bit of their own accord.

Felt the same as you that most people on here seem to have been put on it automatically.

I guess its different between individuals..

[amt50]

I went to hospital on 25/11/15 to be told I had PBC, the letter the consultant wrote to my Dr which is dated 4/12/15 states.....

cholecystectomy and subsequent MRCP (what's that?) this showed no bile duct abnormalities. However repeated blood test since that time have always shown raised alk phos and raised ALT. Only recently was this referred to the hospital for a full liver screen which identifies positive antimtochondrial antibodies with a titre of 1:640 which clinches (Dr's words in the letter) her diagnosis.

The letter advises my GP to prescribe 'urso' (cant remember full spelling) I didn't get to see my Dr until 16/12/15 and my prescription until a week later and didn't start on Ursofalk (name of brand) until 30th December guess I was in denial and I didn't want to take medication for life. It wasn't unill I started reading up over the Christmas holidays that I frightened myself into taking them.

I have been itching like mad and I am really quite down about having to take them. Everyone says, not to think too much into it that life expectancy can be normal BUT taking this medication and constant itching is a constant reminder that my life will never be the same

(sorry it sounds depressing however that is exactly how I feel)

[Hils67 in reply to amt50]

Hi, I'm in a similar boat to you. I was told by my GP that I had PBC and prescribed Ursofalk. I felt like I'd been kicked in the stomach when she said I would have to take them for the rest of my life. she also said to cut out all alcohol and give up vaping. .this would be a huge lifestyle change. To be told this just before Xmas was the icing on the cake.

so, first I cried, then I read the leaflet, cried again...felt so scared and it felt so unfair, as I'm quite a healthy person and only 48. That evening I downed a whole bottle of red wine, expecting a horrific hangover...but no, I was fine. I thought then that the doc must have made a mistake!

Anyway I discovered this site and it's been a real eye opener to all the people suffering. It also has made me think I need to take his diagnosis seriously, although i haven't seen a consultant yet so I guess there's still time for there to be a mistake!

anyway, like you I have now developed symptoms, itching, bloated, tiredness, heartburn etc. I think this is just getting used to be urso and should settle down soon, getting these symptoms does encourage me not to drink heavily - although I've not given up the vaping yet!

I hope you find this site as useful as I have and that your symptoms calm down soon.

Take care

[amt50 in reply to Hils67]

Thank you Hils67

Similar cases then, I am 50. The Dr told me to not drink more than the recommended level for alcohol didnt tell me to stop completly, also didnt mention changing diet etc.

This was the Gasro Dr, I am being referred to Liver Team??? In fact I might phone now and see when I can expect an appointment as I have so many questions now...

Thanks

[Hils67 in reply to amt50]

Hiya, I've been told by the hospital that an appointment with them will be about 9months wait...as the ultrasound scan suggested no damage and therefore I was 'routine'. at first I was really indignant about such a long wait. But then I thought that at least I'm not urgent, so I'm worrying about it less now.

the Urso I'm taking is causing me to itch a lot more than I did before. It's not too problematic in the daytime, but when it strikes at night it's quite irritating and disturbs my sleep. Luckily my work are very sympathetic and I'm making arrangements to have a more flexible arrangement at work...like starting later if I've had a bad night.

what I'm trying now is a herbal tincture, a concoction of milk thistle, chamomile...along with lots of other herbs that my herbalist has prescribed. Hopefully this will help with my symptoms. early days, but if it works I'll post up on the forum.

I've pretty much cut out drinking in the week, and not getting hammered at the weekends...so my alcohol consumption has dropped down to the 'safe' levels. that bit has been easier than I thought. I'm still vaping though...and I guess in time I'll need to cut that out, but one step at a time.

I'm also drinking peppermint herbal tea, which helps with the nauseous tummy, and I'm trying a detox tea which might help with the sleeping. I'm hoping these herbal remedies will help.

good luck with getting your appointment, but if it's a long wait, then that would suggest not an urgent case so try and look at it positively.

Take care

Xx

[Twinkle26]

I have been reading posts from many on here and to be honest what I've read only makes me feel like I'm the lucky one, as they are suffering more than me. It's new to us and not taking the medication or as some say the supplement is not helping you, when you take it your body needs to adjust to it and vise versa, perservere as others on here have. see how it goes and its job is to slow the Progression down. Good luck and I will get back to you when I've seen my specialist.