I got diagnosed last spring, during lockdown. Since then I've only had one hospital appointment, which was a phone call. I've had lfts only done twice by my GP. What is the normal routine for checking and monitoring of PBC, particularly for those of you who have been diagnosed for a while?
Many thanks.
Hi KakeyThere is no set of frequency for bloods or appointments. This is determined by how your bloods are and what medication you are on . I have been as frequent as monthly appointments with consultant to 6 monthly . How have your bloods been?
Thanks Angel. My first blood test was a big improvement, although still a wee bit high. Second test 3 months later a bit higher again, but still quite good. ALP was just under 200, which I was told is the aim. I'm due another test soon.
Sounds like you are pretty stable. If things change your gp can contact consultant to have you seen sooner or ask advise on treatment.
I was diagnosed I 2017. My labs were monitored monthly for 4 months. Then we went to every 4 months, which remains now.
Thank you. Which labs do get checked?
They started out testing hepatic profile. Then my Internist started CMP, CBC, lipid, vit d, vit b12, and thyroid every 4 months. My hepatologist pulls the bilirubin, Alk Phos, alt and ast from CMP.
I might add, all those labs were yearly routine until PBC, then they started testing more frequently.
Thank you. You are getting well looked after 😃
Yes, I have a good group of drs. My hepatologist comes from Dallas each Friday. He works closely with my internist and rheumatologist.
I’m in the US. My hepatologist likes to see me every 3 months and we do labs. He orders other tests/scans as part of the monitoring as needed.
Seems pretty thorough! Thanks
These are my quarterly labs:
1-comprehensive metabolic panel (includes the liver ones)
2-lipid panel (cholesterol)
3-CBC and Platelets
4-Vitamin D
Once or twice a year, he orders
5-TSH (thyroid)
Once a year
6-AC1 (Average Blood Sugar)
Scans-sporadically
1-Liver Sonogram
2-Bone Density (pbc patients are more prone to bone density issues; good to have scans)
3-Fibroscan (measures liver elasticity. I asked him about this test since I read about it on this site and he said, sure; let’s do it to give you peace of mind.)
I think I’ve pretty much been seen every 6 months since diagnosis in 2018, I have bloods done at my gp surgery the week before I’m due to see/speak to consultant so he’s got a recent set to go by. A lot of it depends on how well the urso has brought your ALP down and whether you need other medication added in x
Thank you. Even through COVID? Bloodsbefore your appointment make good sense, I've not even been told to do that. What do they check for?
Pre covid I used to see my consultant at the hospital but at the moment this has been moved to a telephone appointment understandably, which I prefer to some extent and it saves me the best part of a day what with travelling etc. I just get whatever bloods the consultant asks for, so always LFT’s so he can see what my liver is doing and sometimes I’ll have the full works done and have a full blood count (because I’m always borderline anaemic). I only use my GP surgery for blood tests, they don’t get involved in my PBC care.
I do know of some who are monitored less with bloods once a year, particularly if their ALP is stable and their symptoms are manageable. I think I see my consultant more as I’ve never responded fully to urso and so I take bezafibrate too which means I need monitoring a bit more x
Thank you, that's helpful. Hope your med combo is working for you.
I’ve had PBC 11 years, I’ve always had six monthly bloods and annual ultrasound and consultant appointment. (Last year and this year by telephone obviously) my level of checks only increased to 3 monthly when my bloods went over what the consultant considered normal for me, once that settled down it went back to routine 6 monthly.
The important thing is: they monitor your blood response to URSO in the first year to determine if it’s working for you.
I started out with doctor and tests every 3 months then went to every 6 months. Now I go once a year. With random 3 month blood work, depending on my yearly blood work.
I was diagnosed in Spring 2020 also by post. I’ve had one person to person appointment in July the same year and my next one is July 2021. think consultant is waiting to see if I respond to Urso.
Pretty similar to me then. Thanks
Hi Kakey, I’m just checking to see if you’ve joined the PBC Foundation? They were an absolute lifeline for me in the early days. They have loads of reliable information about PBC, there’s a magazine and local groups in the UK and they will take calls for support and advice. Can’t recommend them highly enough.
Cxx
Hi Kakey, just noticed this thread. Am I right in thinking that you have PBC but are AMA Negative, if so please can I ask how you were diagnosed and where? Many thanks.
Thanks Kakey, am I right in thinking that you are AMA Negative?
Why do you ask?
Hi Kakey, I have all the symptoms of PBC /PSC but a recent blood test for AMA and ANA was negative. Based in the UK and waiting to see a Liver Specialist in the New Year. I am terrified that I may have PSC as I know only a very low % of PBC sufferers are AMA negative. I am hoping and praying that I am one of the 5% without the antibodies.
Push hard for a biopsy. I was fobbed off for a long time. But it's a horrible position to be in, I know how worrying it is, and you have my sincere sympathy. Waiting is so difficult. Keeping my fingers crossed for you xx
Yes, AMA negative. I eventually became ASMA positive, but biopsy was conclusive for PBC only.
I was diagnosed with PBC and resultant cirrhosis early 2013. After initial elevation in my liver enzymes, everything has returned to normal. I get bloodwork and ultrasounds done every six months.
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