Once diagnosed with pbc how often are blood... - PBC Foundation
Once diagnosed with pbc how often are blood tests done?
I wouldnt think there was a standard rule about when. It would all depend on the patient, their illness, how progressed it was and the results they were getting and the medication they were taking. 
As I have found out, it depends when we have the routine blood tests for PBC. I know when I was going to the hospital for 12mths between 2010 and 2011 I was having them taken at 3 monthly intervals.
On an agreement with the hospital consultant in Oct 2011 when I asked if I could be discharged back to the GP 'for now' due to me not having any other problems except the itch (as the fatigue had vanished) and the urso appeared to be working ok, he did just that and sent a letter back to the GP.
I had the next repeat after Oct 2011 in Feb 2012 as the hospital consultant recommended them at about 3 months intervals until it was better established how one was making out with urso.
In Feb 2012 my bloods had inclined and were back to roughly how they were after not long starting urso and the first blood test. So the GP recommended I return in another 3 months which I did and they were very good. Of course when I went again last Oct., they had started to incline slightly again. I now have another repeat tomorrow.
I did ask the GP last yr and his reply at the time was that if one is having more of what is considered results that aren't so variable then gradually they'd decrease. I was hoping to just go at 6 monthly intervals but until probably later for me it's not going to be known hoe I am going to be at present.
I feel altho' I am pretty great at present, the bloods tomorrow might show different and then come another 3 months like last yr., they will be good again and a pattern for now will be established and I might be on every 6 months. Some PBC patients are on 12 monthly blood repeats. I think at the end of the day regardless there's nothing can be done really about the blood results but having at set intervals (my ideal would be 6 months, earlier if I felt differently) in my opinion, it seems a better offset of care.
I was diagnosed in Jan 2011. I have blood tests done 2 weeks before my follow up appointment with the consultant is due - that was 6 months after I was first diagnosed and since then just before my annual check up appointment with the consultant. I asked my GP why I was not having regular blood checks done as it appeared from what I had read on this site that others were having more regular checks. Her answer to that was 'well they must be more poorly than you'. She does not believe it necessary to carry out any interim blood tests unless I am unwell.
Hello mumofthree.
When I was going to the hospital (I went for 12mths., saw the doctor 3 times in that period then got him to agree with me to discharge me unless in future need to go back), I know after diagnose at my first visit I was asked to return in 3mths but I said 6 would be fine for me. So he gave me one of the blood bags with the details on of which bloods he wanted before I saw him again. (He did specifically say at the time the GGT was the one normally missed with PBC at a GP surgery.)
Now had I have been going back to the hospital at the 3mths interim period as opposed to 6 he wouldn't have asked me to have the bloods done at the GP surgery in-between.
Apparently it can be a year and just over before it is established if the urso is really helping and in that time with the bloods some sort of graph can be plotted out. I know for me this repeat today of the LFTs (they were missed last wk., only had the FBC taken!!) should show after just over 2yrs on urso a pretty good picture I think as in my first yr the LFTs started to decline and then by the end of the 1st yr they'd started to incline slightly, then they decreased again May 2012 but then started on the increase again later last yr so expecting today's when get results to show another slight increase. Expect if so be asked to go back again 3mths and hopefully they'll have taken a good decrease once again like last yr. I think if so, then I'd not bother for now if I didn't haev anymore for 6mths. It seems such a muddle going to the GP surgery despite last yr all being well until Sept when I saw a different nurse at surgery, she reckoned to be telling me why I was there and then forgot the liver, bone and GGT! This time the original one took last wk and she forgot the liver, bone, kidney and GGT!
At the end of the day I personally go with how I feel and I'm doing pretty good currently BUT it is a bit of a thing as in mind as until you have the LFTs it's pretty difficult to know just how you are actually doing on urso so understand the frustrations of some and the time lapses between bloods.
I think, like everything else about PBC, it depends on your doctors! Before I was diagnosed, I had monthly blood tests, after the diagnosis appointment it continued as a monthly and after the 2nd consultant app, it was changed to quarterly. I am kinda glad that it is less frequent now. The monthly tests were like some kind of torture because I was always in a panic when things seemed to be getting worse and worse!
My Gastro Dr. in the US does labs for me once a year, unless there has been a problem. My pain clinic dr pulls bloodwork every 6 months, so between the both, I know what they are. I request copies and compare them to older test.
I am always interested in the bile numbers and my creatine level. I have saw my ALK vary over all of these years.I have saw others elevated and come back to normal. I don't know what my stage is at the present, for I haven't had a biopsy since 2003. At that time, it was stage 2.
Magnolia
My first year it was every month, then it was every other month for the next 3 years, then every three months for the next two years after that, now it's twice a year.
By sounds here SLWB you are not in the UK?
After diagnose in Dec 2010 it was only 6wks before I had my first blood test to check how the urso had started off. Then it was 3mths later and has been so far but I've only been on urso for just over 2yrs.
It also depends on medication, when I was on steroids it was every two weeks to see when the dosage could change. Then I was put in imuran so they were monitoring that, bloods every two weeks, consultant every month. Now I am down to bloods every month, consultant every two months, hopefully next visit this will change again to a bit longer between visits,
Newly diagnosed with preclinical PBC
Just recently diagnosed with PBC
Just been diagnosed with PBC
Just diagnosed with PBC
