I called my doctor, while I wait for my tests this week to see how strong my AMA titre was. It was 1:160. I googled and it said anything over 1:40 is considered high and strongly indicates, with my ALK phos and GGT levels PBC. No surprise there, I guess. I really don't want to have a biopsy, but I guess I will if I have too. But I would assume it looks pretty strong that I have PBC then. I have come to terms with the PBC diagnosis, really. Just don't want them to say I have something else now that I've dealt with this.
How high were your titres? Did they tell you?
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NotorDJP
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Hi Notor. My titre was >640. Not sure about the relationship between the strength of titre and disease progression. My PBC has definitely progressed in the 10 years since diagnosis but as you would have gathered from this forum, everyone's journey is unique. Hopefully you will have your questions answered soon and fingers crossed you stay stable and healthy. Good luck !
Yes, that is the impression I have also. My consultant states that it is a slowly progressing disease in MOST people but there is a significant minority who fall into a category of non-responders to Urso whose disease then progresses at a faster rate, consequently causing more problems. I responded ( although never fully ) for the first 7 years and then 3 years ago, for no apparent reason and with no symptoms other than worsening fatigue, LFTS deteriorated significantly with stage 3 fibrosis revealed on liver biopsy - so now classed as a non responder to Urso. I am on the trial drug OCA so will find out later whether LFTS are improved at all. Main marker for improvement this is looking for is decrease in ALP. It's a baffling disease - I remember chalking up my worsening fatigue to having 4 children and my job as a nurse so got quite a shock to learn how much my PBC had progressed without my really being aware of it. Cést la vie and on we jog !!
Yes, that's right Peridot. My bilirubin is normal which I'm very grateful for.
It's my continually dropping Albumin and escalating LFTS that prompted my Dr to further investigate as I described above. He said with the amount of liver damage evident on biopsy and reinforced by 3 fibroscans, he is very surprised I don't have rising bilirubin yet. So I feel that once again this disease is mysterious but as long as my bilirubin remains normal I'm grateful.
I also have had pbc for ten years. Main problem being terrible fatigue. I have three children and also a nurse . Lately I ve had two bouts of sickness both for three months at a time ,due to picking up virus s which affect s my pbc and makes me feel awful. Have you had any problems with working in a hospital environment, And have you been given support .
Hi Loopyblue - cute name ! I concur completely - fatigue is my biggest battle.I'm sorry you have been so unwell - do you work in a hospital or another facility where you picked up the viruses ? I work in an acute public hospital in Melbourne, Australia and have had no problems such as you are dealing with. However, the nature of the work is so taxing - acute stroke, epilepsy, neuro - that I am struggling with the fatigue. My boss has been wonderful in allowing me an exemption from night duty and the staff are supportive but in the end it is still a frantically busy public ward and I have pushed it about as far as I can. Consequently I am considering other less taxing options at present. Are you able to reduce your hours or look at another job Loopy? Has your workplace been supportive ?
Yes karaliz, I m also on an acute urology ward in England. I m struggling in work. We have a lot of single rioms and tend to get very poorly patients. I m waiting to see occupational health to ask them to re deploy me to clinics. It will be boring but can not stand the stress any more and have come to realise my health is more important . Being immune suppressed does nt help either ! You should look into something else too
I understand completely Loopy ! Struggling at work is exactly how I feel. You are clever to make the move to outpatients as we call it here in Oz ! I will take your lead and start investigating more seriously. May I ask why you are immunosuppressed? Are you on a particular med that is causing this ?
Good on you to look into a less stress free job , I think it would benefit us both. I was told that due to pbc being an auto immune disease that we would be more susceptible to virus s as our body would struggle to fight it more than other people. I ve had a virus now for three months and still struggling to fight it. Waiting to see my consultant which is taking forever. Love Australia I have family in Perth and did visit in 2005. I did part of my nurse training for six weeks inMount hospital and hada great time . Good luck with your job hunting
Thank you Loopyblue. I have never been to Perth but W.A is on my bucket list ! My 19 yr old is there at the moment and absolutely loves it. I was lucky enough to visit London last year with my husband and 2 of our children and had the most wonderful week. Really love U.K - just wish it wan't a 21 hour flight away ! Good luck with your work situation also. Take care.
It appears with the AMAs it is of no indication with regards to progression of PBC. I think PBC can slow down and then gain a bit and then slow down and so forth. I think a lot depends on our day-to-day living. I find some days my itching isn't as prevalent at night, others it is a real irritation. I then wonder what I had different as nutritional intake during the day.
Hello NotorDJP.
I never received a figure when I had the AMA (and ANA) blood tests later 2010. ANA came back negative, the AMA was said to be 'a high titre' and the consultant wrote on his letter that it was positive and diagnosed PBC Dec 2010. (I did have itching and fatigue at the time, also abnormal bloods and GGT relevant for PBC.)
I have looked into figures for AMA previously and seem to find 2 different calculations, a ratio one and a figure. Depends on the laboratory, how they put it down as a result and also it more than likely varies from country to country with the calculation.
I expect the hospital consultant will have a figure for the AMAs of mine as I got the letter in more standard terms (he put Vit D was 'a bit low' and added 'but not too bad' so I did ring his secretary to ask what it meant as in a figure and she sent me the print-out).
Now the AMAs can fluctuate and also if I was to have mine retaken I may get a negative result as it can happen. My theory here is that if you are on urso and your bloods are coming down each time then it seems to appear that there aren't as many of the antibodies being produced.
With PBC it is possible it can go into a sort of sleep mode for awhile or never progress further than it had.
After my daignosis I noted that from Aug 2010 when I had the final bloods at the GP to the ones I had done at the hospital early Nov 2010, some of the relevant ones in PBC had actually started to go down naturally and one was quite significant and that was without any urso.
I have had pbc for ten years and never found out my blood results on initial consultation. How ever as mentioned everyone is slightly different and as someone else said it is a slow progressing disease and you usually die with it not from it . Keep your spirits up
Its great that you guys are mostly overseas on different time zone than I am, because when I wake up in the morning, I always have messages from you! Its like a present!
Thanks guys, I appreciate your continued support. I had another bad night last night. More just letting some of this sink in. Had a good cry and talked some things out with my husband. Unfortunately I'm trying to get some kind of sinus junk thing and I was up several times with a sore throat last night. So now I'm going to be late to work and miss a couple of meetings. Oh well, life in the fast lane. My U/S is super early for me tomorrow. 6:30 am my time. So tomorrow will be a long day. Hopefully I can make it through!
One other question is the albumin. Mine is in the normal range, but its at the lower end of normal. I don't know if this is what its been for a long time. I do know its .1 lower than it was in 11/2012 than it was in 11/2013. Not sure that is significant or not? Bilirubin is normal and has been up a little and down a little. Just been looking at my lab reports over the past year or so to see what it was like.
My first AMA test was negative. A month later it was repeated & was 1:40. They told me some people may have PBC with negative AMA, so you do not base the diagnosis on the AMA alone. I had elevated ALK for about 8 years prior to this AMA test. My biopsy did not show anything. Therefore, my liver specialist told me I have PBC, in early stage one. Everyone is different, however, in general, most people will die "with" PBC, instead of "from" it. I could stay in stage one for 20 yrs. or never progress out of stage 1 or 2, etc. Another person may progress to stage 4 within 8-10 yrs. So, its a "wild card." I was told you just take the Urso (which has brought my ALK down to normal range) don't smoke, drink alcohol in moderation, eat healthy, get plenty of rest, etc. & you should be ok. If your ALK stays below 180 (with Urso) you are in remission, so you will most likely live a normal life span (as far as PBC is concerned) Hope this helps you.
Had my ultrasound this morning and more blood work. Fingers crossed on the US!! I peeked at that the order for the blood work and they are testing, ANA, ASMA (I imagine to see if I test positive for Hep), Thyroid, and a few other things.
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