I've been taking urso now for three weeks and had my first blood test today. All my lft results were cut in half, but still not normal. I thought this was quite positive, but was told not to get my hopes up and the real test would be at 3 months. So now I wait.
Has anyone else had such positive results after only 3 weeks on urso only to have it go the other way after 3 months?
The other thing that dropped were all my blood levels which were already low, but now even lower.
Not sure what to think, very scary
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alison600
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I started taking urso December 2010 and had my first bloods taken around 8/9 weeks later. My bloods had dropped pretty well but not to normal. Mine continued to drop for the first year and then started to see-saw, up and down and that is how mine have remained. Looking at my last ones they weren't overly-bad but still higher than normal.
We are not expected to have normal LFTs as they are known (the liver function test) and also the GGT (one taken in patients with liver issues) with having PBC though some do have theirs return to normal over time but seems from this site it can vary greatly.
I used to make note of the bloods and get a print-out from the GP surgery but a case of now I just go with how I am feeling and quite frankly don't bother that much. I decided long since that I'd not think about PBC (though difficult as I itch, have since early 2010 (that's how I was diagnosed aged 46) so reminded every night I have PBC), I'd deal with anything as and when and not dwell on how PBC might become. In my mind as important as it is, I am of the way of thinking regardless there's nothing I can do much about having PBC so I'd rather crack on with living life now, do things I might feel I want to do, when I want to do them and not waste time thinking about it.
You do need time after diagnosis to come to some sort of resolution with yourself and if things are going well then you can more than likely do this. I am not sure what the future holds for me but at the moment I am doing well, just seem to have the itch I (and the abnormal blood counts I only know about when I go for the blood checks) and I think about others out there who are less fortunate than myself, especially as the festive season is almost upon us and I have a small family who I'll be seeing, some will be out there in the cold in the UK living on the streets.
Thank you this is helpful. My Dr. mentioned that if the ALP drops below 200 you are considered a responder. Did yours ever drop below 200? My ALP is currently at 383 after 3 weeks on Urso, but was 738 to start with.
Well I've not had any information regarding responding to urso, etc.
I know that my ALP was less than your 738 when I started on the urso December 2010. (It was under 600.)
I have just looked at what I can (I get all my results in print-out but recently they have appeared on my GP online access - I'd like consultation and dates going to surgery to be on but at the mo they're not) and my ALP fell dramatically on a graph I can see (as well as the numbers) during 2014. they have done a little climb since but my lowest has just been over the 200 mark. I have found that half of the year mine drop and then the other half they climb a bit. I used to book in every 3mths but then the GP said to go every 6mths as recommended by the consultant.
To be honest I've not been in almost a year. I have just booked my blood for after the New Yr making that a year since I last went. I kept putting it off as quite frankly got fed up of it all and the attitude at the surgery isn't the best. I was informed verbally by my GP I see January (2016) that if I didn't go in for the bloods or forget, I'd be reminded. I had expected to be reminded when I ordered the urso that I do every 3mths but so far this year nothing. Even the med review date was just altered in July to 2017 on my prescription and I've not been in to see a GP at all this year.
Very interesting thanks for the information. When I went to my first appointment at the liver clinic, they seemed unconcerned with my high numbers and said they see lots of people with results as high as mine. They at the last appointment yesterday they made me feel like I was dire and results in the 700s were just unheard of and that the chances of me dropping below 200 were slim. Very frustrating. Additionally, my CBC results were all very low for platlets red blood cells and white blood cells.
I feel fine, I have no symptoms not even itching so it's hard to get the news that I am in bad shape.
It would be great to know if anyone else had numbers as high as mine that actually fell to below 200 and stayed there.
Thank you for responding. Since you have had this for over 6 years now how are you feeling?
On checking my full blood count, just the lymphocyte count is always slightly below normal but I've always got, 'OK for this patient'.
From school and biology I remember that the colourless 'water' that we sometimes see as opposed to a cut bleeding the 'red stuff' is known as lymph I presume this is what lymphocyte is perhaps.
Since just before diagnosis and once a couple years following I had a lower haemoglobin count and it was found I'd anaemia and had short courses of iron tablets. The cause was actually due to minor nose graze that caused nosebleeds (of which I have seen ENT) and was fine following.
I've felt pretty much OK but I find that this PBC can feel a bit cyclical. I find during the summer months if we happen to have hot days in the UK (I am North West so we don't get same as down South) I can feel more itchy. When I am cool the itch doesn't seem to cause me to prickles which is usually the prelude to having to have a good old scratch/rub.
I find the biggest bugbear of this PBC is that due to the itch later at night and it causing broken sleep where I have got into habit of visiting the bathroom several times in the night (well it does vanish the itch for about 10mins), I start feeling tired some days later afternoon. Before early 2010 and no itch and at the time I thought I was pretty much 100% healthy I could just lay in bed during the night if I was awake at times. I reckon I burn a lot of energy during the night with being up and down as being still does cause the itch to be there with a fearsome presence.
i thought the itch went away after time. I thought since I didn't have the itch now, I may not get it, but it seems I have something to look forward to
Do you get regular MRIs done to measure how your liver is doing?
It seems that with the itch it can vary with PBC. A lot like myself started to itch intensely, that is how we got on the road to being diagnosed with PBC. Some are found to have PBC after a routine liver function test check that then takes them on the road to being checked out further.
The itch can be present or not at diagnosis. Some patients never itch with PBC but others start off itching like me and then find out they have PBC. I think it is rare that once the itch is with one, it vanishes though it is possible it can do. Some with PBC develop the itch over time. Hopefully are are one of the lucky ones and you never do develop the itch.
I've only ever had an ultrasound pre-diagnosis. That was summer 2010 and I was found to have a normal looking liver, surrounding organs and the consultant said he could see clear bile ducts.
There are various different scans apparently you can have with PBC. There is now a newer one in the UK (not sure if there is one at my local hospital but expect there is one a bit further afield in Lancs as someone on here recently posted so and she is in Lancs), that's the fibroscan that is supposed to measure the liver.
There is also an ERCP one can have with PBC, that apparently can check the bile ducts.
I am pretty confident that an ultrasound can show my liver if needs be. I know back in 2010 a couple months prior to me finding out I'd PBC I saw a prog in the afternoon on TV. The presenter on the show had 2 men who were having ultrasounds there and then live to air. The doctor went through each. The first man, think he was in his late 30s and he was a tad overweight and he was found to have a fatty liver as the scan was pointed out to show. The other man in his early 50s was said to be in the stage of cirrhosis due to it being said he was an alcoholic.
I think I'd need to know more about what you mean by 'all my blood levels' etc. Didn't the Dr (whoever?) comment on this. Do you have a printout of all results? If not, get a copy - it is your right - then you can post them on here for more details.
However, much better still, talk to the trained advisors at the 'PBC Foundation' (link at the top of the page), who host this site. You will find contact phone nos and email address to talk to them, on the site. They are the experts, while we are all very different, and can often only give opinions.
I've always requested my blood results in print-out since being diagnosed. MIne came about as I was informed by letter from the hospital consultant just after being diagnosed that my Vitamin D level was 'a bit low' and he added further 'but not bad'. I wanted to know what that meant figurewise so got the reading and all my bloods during 2010. Since requested though they have been online now since earlier this year so I can print my own when they appear.
I know on mine as expect others, there is the actual reading the lab got and besides the figure that is deemed normal range.
I've always glanced through mine as I know from experience that in the past one or two have been missed.
The GGT that is apparently taken with PBC (the consultant spoke about this when he wrote an envelope at the hospital for me to have bloods at the GP surgery between my next visit to him), for me this has been one that has been missed a few times in the last 5yrs. It was even missed when I last went for my bloods.
I once was a bit puzzled by mine in the early days as the GP I had newly registered under just didn't seem too bothered and I got the print-out with just 'OK' on them. I booked to see anther GP in surgery and he went through them with me when I went in and explained. This is what I'd do if I wanted to know more.
Yes, I do have copies of all my blood work and Googled every one. My GGT was over 400 last time. I just seemed to be getting mixed messages is all. One appointment seems to be optimistic and I leave feeling ok about the whole thing and the next one like yesterday I feel like I should start planning for a transplant.
Hi Alison600; When I started on Urso, about 9 years ago, my doctor told me that we would know in about a year whether or not the Urso was effective. However, as I had bloodwork every 3 months, the numbers slowly fell to almost normal levels after one year. Over time the LFTs go up & down, but the dr had told me that there would be these fluctuations, sometimes my Urso dosage would be increased to the upper limits of the dosage for my weight & my numbers would even out. Some of the numbers never do get 'normal', but are just slightly elevated. I hope you speak to the doctor and discuss each set of blood tests, why & what the numbers mean. I find it upsetting that anyone at the medical center you attend would be so unprofessional as to tell you 'not to get your hopes up', etc. I have to wonder at the level & quality of training of so-called professionals who talk in such an unfeeling manner. Eat sensibly, drink lots of water ( no alcohol if possible), plenty of rest & keep track of your blood work/ numbers. Best of luck & have a wonderful Christmas! PS: let us know what happens with the numbers.
Thank you, I appreciate your comments. I don't drink and do eat sensibly for the most part. Was your ALP as high as 738, and did it fall below 200? Are you considered a responder since your levels are near normal?
I'm not thrilled at all with this Dr however finding someone that specializes in PBC is difficult.
I don't believe my ALP was ever that high, but it is just under 200 lately. And you do say that yours has fallen significantly in the past little while. I strongly urge you to get a referral to a hepatologist with whom you feel more comfortable. Over the years I've had/seen some medical staff that I'm pretty sure googled PBC just before coming in the room & others that are so knowledgeable & informative that I kick myself for not having a tape recorder with me. Can't recall ever hearing the term responder, so I don't know about being considered one or not.
Thank you! You just said exactly what I thought after leaving her office on Friday, it's like she just read an article about PBC! I'm hoping there is someone else available for now I just need to wait until February for my next blood check.
By responder, she explained that if you stay above 200 for your ALP you will eventually need a transplant, however below 200 you could lead a normal life. It sounds like you are in this camp.
Are you in the UK? Also, when you talk about your 'Dr' do you mean your GP, or is this the consultant you have been sent to? If you've been diagnosed with PBC, then you should have been sent to see a specialist, preferably a Hepatologist (liver specialist) rather than just a general gastrologist (you can check on hospital websites the strength and specialities of their different consultants.) I would ask to see a Hepatologist, preferably one who is familiar with PBC. My consultant is a PBC leader, and goes mainly by the GGT and ALP levels, but before I changed to seeing him - and asked for GGT to be included every year - the lab that my GP practice sends bloods to did not include GGT.
Sadly, many GPs don't know much about PBc, it is fairly rare, and some have never treated someone with it - my old GP hadn't although he was great at getting himself of to speed, and supported me in seeing a different consultant.
If you are in the UK, and say on here (maybe in a new post, as most people won't be following this one any more) where you live, then, someone can 'private message' you with details of good consultants they have seen. [NB ask for 'private messages' as PBC F is a charity, and - I believe - such charities can get into trouble if they bandy around names of medics or centres.]
Hope this helps, but try to keep cheerful and spoil and cosset yourself. PBC does not have to be as bad as it used to be thought, few progress to need transplants, and the best help is to avoid stress and live well and happily. Do things you love - a great stress buster - and look after yourself.
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