Dr didn't prescibe anything for pbc

[luisv187]

Hi everyone,

I was wondering is it normal for docter to not prescribe anything for pbc, he said nothing really helps so only thing to do was a check up every 6 months?

[donna01]

Is he a gastro? I would get a second opinion. They say urso is what slows down the progression of the disease. Google it for yourself.

[teddybear7]

The first thing my Dr did was make me an appointment with a gastroenterologist who put me on ursodeoxycholic acid it slows down the progression. So you really need a

Second opinion & should be with a specialist.Xxx

[Jojowen]

Hi, this doesn't sound right to me. Urso helps a lot. No cure but I am certainly feeling better now than I did before urso. Get a second opinion from an experienced gastro.

All the best,

J

[Lucylongstockings]

My gastro dr. Just said well you can go in urso if you like but I don't think it will help. I take the urso...and I'm bring referred to a different dr. I'd get a second opinion.

[Brummi]

Once diagnosed with PBC my checks were monthly. Seek more advice..

...

[Hidden in reply to Brummi]

I only have checks every 6 months Brummi. I think it varies between Health Authorities in the UK. Some regions (I am North West) tend to be a bit behind with the times it appears than our counterparts down in the South it seems.

The hospital consultant I saw did actually know about PBC and he said he gave talks to GPs about it. He seemed to me pretty clued up on it. A year after diagnosis I asked for a discharge as I was finding the trip (takes around an hr and 15mins walk from home just to the hospital) and the time spent in outpatients a bit fruitless for what occurred (weight, blood pressure a time or two followed by more sitting in reception to then being shouted to see the doctor for a brief 5mins., 10 if lucky after diagnosis and then another long wait in another area for the bloods). I was doing pretty good so the hospital consultant agreed with me stating the in future if needs be I would be referred back. That was 3 and half yrs ago now and I am pretty good, my bloods are still improving with time and there are no changes at all so far.

I started having bloods every 6 months as opposed to the 3mths I used to do last summer as I think now it is is pretty much a case mine seem to dip a bti certain time of yr and then go up slightly at another. Make a slight wavy line on a graph they would.

[Brummi in reply to Hidden]

I agree it depends on where you live. But that seems to me to be wrong. For such a bad disease we should be monited more frequent. Lets hope that one day a cure is found for it.. I had a lot of blood test and when I asked what are they doing with it all I got told they have a black pudding factory behind the hospital.. Some sense of humour the doctor had..

[Hidden in reply to Brummi]

I don't actually think it is wrong that I just see my GP at intervals at present.

I have heard on this site later last year that it is the intentions of the NHS at some point in the near future (whenever that might be) to discharge patients back to GP care with PBC if there seems at the time not the required outpatient visits a PBC already attends.

I do think though that the reason we are not taken as seriously as it seems to me is because at present there is no known cure and there is only urso that can be prescribed.

I know some doctors like to check patients out for allsorts of things but I personally just do not want to know or have the desire to go through some test just in case. I sometimes th ink that by doing certain tests on patients just to see if they may have something amiss can ultimately then go on to do more harm than good.

If a patient agrees and they request or want to find something out then that to me is each of our own perogatives as at the end of the day we each know how we feel. These might be my views at the moment but I cannot say they are permanent as with having PBC now I never know what might be out there but at the same time I refuse to think about such things and just continue cracking on with life.

[Brummi in reply to Hidden]

In my.case I seemed ok for the first 12 months, how ever the next 12 months I deteriorated quite fast. I wonder if a GP would know at what time to take the right action.

[Brummi in reply to Hidden]

When i was diagnosed for the first 12 months all seemed ok. But the next 9 months I deteriorated very fast . I wonder if a GP would know when to take the the next action. As a diesease which little is known about it should stay with the experts..

[Hidden in reply to Brummi]

Sorry that your PBC deteriorated very fast as you have stated.

I do think that a GP would actaully know if a PBC patient wasn't doing overly-well as at the end of the day reading the LFTs can be pretty common place as LFTs are taken as routine.

With the computers these days GPs can follow certain guidelines via the NHS system.

At present my LFTs are of no cause for concern and but for the itch I'd not actually think I had this PBC.

I know back in 2010 I followed a pretty standard NHS pathway to get the diagnosis of PBC. The only gripe I have is that at times the wheels of the NHS seem to move slowly.

[nancystreit in reply to Brummi]

I think you should be seeing a specialist in liver disease. Guidelines are helpful but disease is not a cookbook kind of problem.

[posh in reply to Hidden]

peridot, where did you hear that all PBC patients would be discharged from their consultants care and referred back to their GP?

[Hidden in reply to posh]

Hello posh.

I read it on this site later last year actually.

I did contact the lady who posted and she replied saying that this was going ahead re planning but currently it isn't in place.

I'll see if I can find what heading it was under but if you look under my profile and work back you might just see it there.

The gist of it was that patients who were pretty stable with their PBC and who had no problems at the time could be discharged back to a GP care for the PBC and have their bloods monitored there with the referral back if needs be to a consultant.

I asked to be discahrged from my consultant after I had attended for a year almost following diagnosis. The consultant looked through the results of the bloods since diagnosis, I'd not had any other problems in that time and he said he would dishcahrge me back to GP on condition if needs be in future I'd return. I was discharged back in Oct 2011 and 3 and half years on as is currently, I am pretty much the same but my bloods have improved even more over time.

[Hidden in reply to Hidden]

PS posh I have messaged you.

[Wispa123]

hi, I too am in same boat but am being checked every 3 months, I was diagnosed at same time with Polymyalgia Rhuematica from which I now have medication for and it is helping so am trying to deal with one thing at a time. I see from reading PBC Foundation stuff that this does happen and does not mean negligent consultant, but if you are not happy suggest asking for 2nd opinion. Do call the foundation they are very helpful.

[Hidden in reply to Wispa123]

Hiya Wispa123.

I am not certain but I think maybe if one has something else that they have to deal with (your case PR) then certain meds can alter the LFTs so perhaps that is why you are having your checks every 3mths. I used to have bloods done every 3mths but then at the start of 2014 the GP reckoned it would be OK for every 6mths. The hospital consultant when I asked for a discharge Oct 2011 suggested it would be ok for my bloods at 6 monthly intervals. One GP requested every 3mths from then as I kept having a slightly under the line normal for HB and then I had a slightly lower than normal ferritin (iron check) later 2013 so that was corrected before I went to 6mths.

[Wispa123]

PS, My Dr did refer me to a liver specialist who did not prescribe anything just said to monitor it at this stage as I am asymptomatic ( ie no symptoms just found through blood test.) suggest Dr should at least refer you onto specialist.

[donna01 in reply to Wispa123]

Wispa123, I too am asymptomatic and was found through blood work after gallbladder removal. Was being monitored every 6 months for a year. Alt/Ast, Alk phos. I still have no symptoms, itch, tiredness, etc, but am on Urso now for 5 months and now my hair is thinning really badly. I am considering stopping the urso for a while until my hair thickens back up. This is really depressing me bad.

[Wispa123 in reply to donna01]

sorry to hear that its not great, Hope you can hang on and that things settle down. Worth talking about pros and cons with someone.

[PBCRobert Partner]

Urso is the "standard care" for those diagnosed with PBC. In general terms, it is well tolerated and has been scientifically proven to have a positive outcome on life expectancy with PBC.

Perhaps call the Foundation and we can discuss your concerns specifically and in more detail.

Yours,

Robert.

[GrittyReads in reply to PBCRobert]

Hi Robert,

Good advice: as always.

I've suggested this before, I think, but I can't help wondering if it would help if the site had some advice: somewhere that would-be 'posters/questioners' and 'repliers' could all see it ... before they post or reply.

I think it might help if posters were to say a little more about themselves (eg which country, have they seen a GP and/or specialist, what tests done etc., symptoms) and then we can tailor our responses to suit.

Also, given that PBC is so variable in people, I think it would help if people replying did not assume that their experience of PBC is similar to the poster's, especially if the person has not said much: maybe sometimes we should be asking for more information??

Everyone on here is lovely and helpful and supportive, and I have myself hugely benefitted from pertinent responses. I just think a bit more guidance might help 'posters' to get appropriate nitty-gritty answers to their queries.

Most important, if we don't know the answer (and even if we do!!!) please, please, please ... I think we could all be telling the questioners (especially new people) to phone all you lovely lot at the PBC Foundation for advice!

Take care, and keep up the good work. I hope you're having a good day in sunny Plymouth - I was too late to get a place!

Thanks,

Gritty.

[susanburgess]

I have a regular check up every 6 months I have been on urso every day for 16 years plus vitamin D. are you seeing a specialist for this pbc

[sheilaro]

I was told there was no cure but Urso was known /appeared to slow down the progress of the disease. It's over 16 years since I started on Urso and and apart from getting very tired have few symptoms of the disease. Blood tests are important to keep you monitored and I have these every 3 months. I believe (although there is no Medical reason) that since I started on Urso my Asthma improved to the extent that I hardly used an inhaler for years now!!

[Hidden]

Hello luisv187.

Normally if you are diagnosed with PBC ursodeoxycholic acid (urso or UDCA for short) is what is prescribed.

I have read that in some cases of PBC if a patient is asymptomatic, that is with no symptons at all (I started with the itch back in early 2010) and their LFTs (the liver function test) bloods show up well within normal range it can be seemingly common for urso not to be prescribed at the time but just monitor the blood at intervals for changes. Do you know if you have normal LFTs (also another blood test the GGT is normally done in liver disorders) and are you currently asymptomatic?

Urso is thought to help slow down progression of PBC but in PBC it isn't often known how we are progressing. It varies greatly between patients it seems.

I've always been of the way of thinking, if something isn't rquired then leave it be. I know in my case I apparently was said to have had PBC 'a few years' by the hospital consultant but until I started itching in 2010 I was unaware of it and I'd not been to see a GP in years so had hd no bloods done or it might have thrown something up at the time or might not have.

I think opinions seem to vary between doctors too as urso at the end of the day is not a cure. It's apparently not understood how it actually works when we take it except it does help break down fats as it acts like a detergent and due to it improves the bile flow in PBC it is said.

Sounds like your doctor is of the stance that due to there being no cure for PBC currently and urso being of mixed opinions he is using his own opinion and if you are not happy then I'd request you seek an alternative one.

Don't worry though as hard as that is, PBC is said to be slow progressing and I am certain if you had been worse when the doctor saw you then you would certainly have been informed.

From my experience, the itch isn't cured by taking urso but it has altered somewhat in the last 4yrs of taking urso. My bloods are still not normal but they are improving more and more over time. But for the itch I would feel normal.

[GrittyReads]

It might depend on what diagnostic criteria you have, and if you have any symptoms of PBC.

Also, are you in the UK? If so, have you only seen a GP, or did s/he send you to see a consultant as well. If PBC is indicated you should see a specialist. Most GPs have never even treated PBC.

You need to obtain a copy of all your tests results from your GP, ask at Reception, it is your 'Right' to have a copy (they may make a small charge for copy ing/admin - mine don't), and then you can tell us and the PBC Foundation exactly what the doctor has done so far, and what tests and the results.

But, most important, Robert is right, phone the PBC Foundation - there is a link to their website at the top of this page, and the site gives you the phone numbers for their advisors, and loads of info on PBC as well.

If it is definitely PBC, then the GP is wrong: Urso has been shown to slow PBC down, but it may depend what your test results are actually showing so far.

Personally I wouldn't Google until you've read all the info from the PBC F. Until you know your way around PBC, a lot of the stuff online is out-of-date and often overly scary.

Take care and look after your self.

Gritty x

[luisv187]

Thanks everyone, very helpfull information,

I live in the USA IN CALIFORNIA,,.

Yes the docter who diagnose me is a liver specialist and the two specialist I saw ,one said yeah you can take urso but doesnt help much and my recent one said it wont help so no point in taking it!? And i than i see everyone on here takes it so made me doubtful on my docter. My pbc symtoms and even to that i dont know if they are related or not because i dont see anyone in here say they have muscle twitching all over body and i do? Daily. All day i have muscle twitching and some bone pain. Which I know bone pain is common but muscle twitching?

for your help

[cazer in reply to luisv187]

Thinks there is some question over effectiveness of ...apparently it may alter bilirubin levels but not actual effect on liver. There is research going on at present to try and work out if it actually slow progression. Cant remember which country its in but queried it with consultant at last check up and he said there was some question over it... so maybe its england thats behind! in first instance I think I would ask consultant to clarify the situation for you. Good luck

[ali-d]

completely confused, deal with tiredness, muscle stiffness and itching skin which is at times worse than others, seen liver specialist for two years to be told whatever I am doing that I m am one of the healthier people with this disease, found out through bloods, nothing prescribed, joint agreement that I will have my bloods checked at GPS twice a year as it is 40minute drive to our nearest hospital, if it wasn;t for the bloods showing the antibody I wouldn't be seeing anybody, totally convinced its more to do with the cost of the medication than anything else that patients with this disease are not being given treatment, as read it is quite costly and as the nhs is struggling as it is , it just may be they would rather treat other diseases, just hope my health isn't to suffer due to it, I am now not sure whether I have PBC or not, nothing is clear, but they wouldn't be doing my bloods for nothing!!!! As for insurance no idea what to put down??

[Pattaa]

I was told by 2 specialist that Ursa doesn't really work, I go for a special ultrasound every six months, and treat symptoms as they arise, this is doctors from Boston treating me..

[NotorDJP]

I don't know about anyone else, but I feel better on the URSO than I did without it. I know that some people become non-responsive to treatment after a while on it, some quicker than others. The disease is very variable. I was diagnosed, via biopsy, at Stage2. My pain I had almost daily around my liver area is almost nonexistent and my energy level, though not perfect, is better than it was. I know that other health issues make treating PBC more difficult. If all you have is PBC (which is uncommon from my experience) and you are caught at an early stage, the chances of Urso helping you is pretty good. I was mostly asymptomatic except for the pain and the fatigue. I don't itch or have any digestive symptoms other than meds and things digesting slower due to lack of bile going through the liver. I now had thyroid cancer, which will be treated with total thyroid removal and meds (perhaps radioactive iodine). I think once you start to layer conditions and medicines that you take for said conditions, your chances of the PBC progressing faster (URSO or no URSO) has to go up. This may not be the case for everyone, but I would imagine its a logical leap. I just hope that I don't get any other forms of cancer or have to start taking anything else except my URSO and my thyroid replacement.

[badpiglet]

Hi Luisv187,

Totally support the advice already given about contacting the PBC Foundation - the link is at the top of this page. Join them (free) and you'll have full access to their great website and lots of information.

It's not exactly clear what tests you've had, what results you've had so it's really hard for anyone to comment.

However one thing that unfortunately seems to be the case in the UK, is that there appears to be a difference in knowledge/approach and treatment between the specialists that work in the big hospitals that do liver transplants and those hospitals that don't. If you live close enough to a hospital that does liver transplants, that is possibly where you'll find the best expertise and support.

If you don't live near one, than best to arm yourself with as much up to date knowledge about PBC as you can, BUT from a reputable source such as the PBC Foundation.

[luisv187]

Thank you for advise, well i only got diagnose through blood work soon to have liver biopsy. But i will go to the link you told me.

[GrittyReads in reply to luisv187]

Do you know exactly what 'blood work', they have done??

I surmise from what you say that you have AMAs ( the anti-mitochondrial antibodies), but are your 'liver function tests' abnormal? That is the other main diagnostic test as well as AMAs: both are usually required for a firm diagnosis of PBC, unless you have a biopsy. If your lfts are normal, that may be why the Doc is not giving urso (yet?), and is waiting to see what the biopsy shows. It could be he wants to rule out other things first?? As I said, that's why you could do with knowing exactly what tests they have, and have not, done.

Take care and spoil yourself, have fun, do things you enjoy. Avoid stress! Any condition, but especially autoimmune conditions, will thrive if you are stressed, so try to keep on living life to the full - tho' also: exercising, eating a good wholesome, low fat, healthy diet, and probably not drinking alcohol.

[luisv187 in reply to GrittyReads]

I posted a new post called pbc test results those were my results. Check them out

Thank you!!! Where are you loctated

[GrittyReads in reply to luisv187]

Good, I'll look tomorrow: half way thru a v. late supper!

I'm in Devon, in the UK.

[nancystreit]

Not everyone responds to ursodiol, but most people do. It slows or stops the disease. You definitely should be on it. Side effects at the dose needed are practically nonexistent.

[nancystreit]

I strongly agree with others. Get another doctor!

[posh]

Hi Luisv187, have you joined the PBC Foundation? This will give you the information you require with regards to Urso and how it works and everything PBC related.

The staff are on hand to deal with all enquiry's and have consultants who are specialists in their field to answer any medical queries.

I hope this helps.