Can I have PBC with elevated AMA yet have normal LFT's.

[shonaf]

My doctor initially thought I had Lupus but I have the wrong antibodies and he is not convinced I can have PBC with normal LFT's?

[itchyandscratchy]

hmm, i would think you could if you were in early stages of the disease and therefore asymptomatic. testing positive for AMA is such a strong indicator for PBC, something like 95% so I dont know what else it could be, will be interesting to see what others think, are you under a liver clinic? would be worth getting a second opinion.

[shonaf]

No but I am going o ask to be referred when I see my GP on Tuesday. I am not asymptomatic hence the doc thinking it was Lupus, was dicharged from Rheumatology yesterday as they have said definately not Lupus.

Thank you for you response though

[kosy2]

Yes I am stage 3 and often have normal LFT's.

[kosy2 in reply to kosy2]

forgot to add that I have never taken medication for PBC

[KevinHall10_ in reply to kosy2]

Have u progressed in stages with normal liver tests?

[itchyandscratchy]

ooh, it horrible to be in limbo like that....I hope they can sort you out soon, good luck. x

[shonaf in reply to itchyandscratchy]

Thank you, I will let you know what my GP says on Tuesday xxx

[Wendom]

Hi there shonaf I have positive AMA also. Normal liver function tests my gp said I didn't have Pbc but I asked to be referred to liver consultant who said as I have the symptoms also they did a blood test called IGM which the consultant told me was also a marker for Pbc this was also positive for me .I'm not yet on urso . I would insist on seeing a specialist as AMA unfortunately is highly specific for Pbc .my liver functions are monitored every six months and my consultant said I'm to start urso as soon as things Change

Can I ask KOSY2 how often do you have normal liver functions ,and can you not tolerate urso, and did you have a biopsy to say you where at stage three as my consultant said only people in pre stage one Pbc will have normal liver functions he called it preclinical Pbc he said urso can then normalise or lower liver function tests but that they would just get worse unless you start taking urso so I'm really confused now and scared that you say you're stage three and have normal liver functions without urso are my doctors lying to me you see the consultant said they don't do biopsys any more in England x thanks

[shonaf in reply to Wendom]

Hi Wendom,

Thank you so much for replying, I am seeing my Gp on Tuesday and going to ask for a referral. I have had my liver function tested in Jan this year and then last month I don't know what KOSY2 means ?

I will let you know on Tuesday is I get a referral. Shona x

[kosy2 in reply to shonaf]

Shona,

What is it that you don't understand? I am more that happy to explain.

[shonaf in reply to kosy2]

Hi Kosy2,

My doc is sceptical I can have PBC with normal LFT's. I am desperate to be diagnosed as I am fed up with the symptoms and very wretched.

[kosy2 in reply to shonaf]

I understand your distress. Since Jan. 19, 2011, the day I received a letter from my doctor stating the I have PBC, there has been little else on my mind. I have spend every day researching PBC. What I have come to understand is that most doctors do not know much about PBC although they think they do. There is no cure for PBC and all the doctors can do is to try to treat the symptoms. Some of the worst symptoms - fatigue and itch are near impossible to find effective treatment for.

It has also been my experience that the more I seek information/understanding from my doctors the more exasperated I am.

PBC is thought to be autoimmune, however they are not 100% sure. In fact, before 1957 doctors did not believe autoimmune disease were even possible. It was not until 1990 that they were accepted. the average patient with autoimmune disease sees 6 doctors before attaining a correct diagnosis. Studies conducted by the American Autoimmune Related Diseases Association reveal that 45 percent of patients with autoimmune diseases have been labeled as hypochondriacs in the earliest stages of their illnesses.

What the medical profession needs are doctors who specialize in treating multiple autoimmune diseases. If you have one autoimmune disease you have a greated chance to have others. It is very frustrating for patients, not to mention costly, to seek treatment from many specialists.

I will pray that you get the answers you are looking for.

[skywalker in reply to shonaf]

I am in the same boat! I have had the AMA for about four years! I am getting referred right shoulder pain, mottled hands, pain under ribcage, aches and pains, vitiligo and fatigue really bad... but my LFTs always come back normal! Last week a new consultant said he couldn't believe I haven't had a MRCP scan which is like MRI but more specific for liver! He was shocked that I've only had an ultra sound, because he said that wouldn't show anything.... and he said, "you need to know whether or not you have PBC"? I feel relieved now that someone is taking me seriously and should know within two months! It's rotten being in no mans land..... Insist they give you a MRCP darling.... apparently it should show up any beading, that would suggest you have PBC and you'll get your diagnosis..... or not!!! There are a few who have the AMA only and it never progresses, so fingers crossed xxx

[mjk98 in reply to skywalker]

The pain under the rib cage I have on both sides it's like a muscle spasm and cramping I'm having a bone scan tomorrow is that what you get I'm now getting those muscle spasms all over my body does anybody get those

[Hidden]

Hello shonaf.

With lupus apparently you test positive for ANA antibodies, AMA for PBC so I think you need to clarify which ones you have had the positive test for.

I have not had catastrophically high abnormal liver function (LFTs) readings since I developed itching and had fatigue at the time back in early 2010 but on diagnose Dec 2010 and starting urso my LFTs did decline tho' still abnormal but not overly-so.

As I understand it, if a patient presents to a doctor with symptons that could be PBC they are apparently given urso, well that is how it is supposed to be but for me I had to wait 2mths longer for the AMA test results.

I presume you are asymptomatic at present, that is you have no symptons of PBC? I don't know for definite but my opinion here is that if you have normal LFTs and do have PBC and as yet they have remained normal then it wouldn't perhaps make sense to take additional bile acid if your system is currently coping. I expect you'd have repeat LFTs at intervals to keep a check with the possibility in future of taking urso. You may be one of the luckier ones and never become symptomatic nor need urso in that event.

I find it interesting that the medical profession, well here in England, seem to have such varied opinions but it has also to be noted that PBC is definitely a condition that isn't that well understood as yet.

Keep us all posted as to how you are getting on.

[shonaf in reply to Hidden]

Hi Peridot

I have high AMA and am not asymptomatic, my doc presumed becasue of my symptoms it was more likely to be Lupus.

I don't suppose any 2 docs will practice the same?

[Lockness]

Hi, I have AMA antibodies which sealed diagnosis for PBC, I also had elevated LFT's before diagnosis. I was started on Urso and my LFT's were normal 2 months later. However I will be having blood tests every 6 months to monitor these.

[melisab]

I have tested postitive for PBC but all my liver enzymes are fine. I just got my biopsy results back and I am in stage 0. I have been taking Urso since I tested postitive for AMA which they say has helped my enzymes. They told me that I could either keep taking the urso or stop it. I have decided to keep taking it because it does slow down the progression of PBC. They told me because I tested positive for AMA that I definitely have PBC it was just caught extremely early. I know of two women who have had PBC for over 20 years and are perfectly fine. Hope this helps!

[shonaf in reply to melisab]

Thank you Melisab xxx

[skywalker in reply to melisab]

Hi Melisab

Why is it that some consultants will diagnose with a AMA positive result and others wont, It's so frustrating.

I have the positive AMA but was told I don't have pbc because my lft's are normal!

Were your liver function tests always normal? Have they ever been raised?

[melisab in reply to skywalker]

Hi skywalker

My liver enzymes were high (but not over the top) which is what triggered more blood work. That is when they tested me for AMA. It came back positive with normal lft's!! I have been blessed to not have any symptoms of PBC. I do have hypothyroid which a lot of pbc patients seem to have but that is it. I did start on urso right away and I also did a full body cleanse along with taking supplements that support the liver. Ever since then my lft's have been great.

I first went to a gastro dr and it was a horrible experience. So my husband found a liver specialist and the experience was so much better. They did advise me to do a biopsy because they said that is the only way to truly diagnose PBC. Mine came back stage 0. They said there is nothing wrong with my liver at all but that I do have PBC because of the positive AMA. I have been told before by a dr that you can test positive for certain antibodies but not have that disease. I am just going to continue to support my liver and try to keep it as healthy as I can. I hope this helps!! The specialist also told me to not research pbc on the internet because there is only bad info about it!!

[Anne-laure_ in reply to skywalker]

Get tested again.. My blood test were normal till they did others.. I tested positive for lots of antibodies and I have pbc. I'm not on any treatment as my ultrasound showed no scars, I'm waiting for another lot of blood test from my rhumy as they think I also got lupus. I had a mri which showed significant abnormalities on my brain.. Good luck x

[tlm82568 in reply to melisab]

I have the same diagnosis. I do itch at times and feel tired. Do you?

[Christine69]

I test positive for both ANA and AMA antibodies. I was checked years ago for Lupus but it was inconclusive at that time. Since I have tested positive for AMA I have been on Urso and my LFT's have been normal. My LFT's were elevated because of a block in my common bile duct and that lead to being tested for AMA antibodies. Once the block was removed my LFT's have been normal and my liver has no damage. I am in the early stages of PBC and that is probably where you are as well. I am very thankful that I have been diagnosed so early before any damage and I am guessing that you may be the same.

[Hidden]

Dear Shonaf

I am in exactly the same situation as you in that I have tested now several times positively for the AMA antibody (at 320 titre level) however my LFTs are fine as was a scan of my liver. I am however experiencing a raft of weird symptoms and have been since December 2010 which include:

stinging/electric shock type pain

Soft tissue swelling

Random bruises appearing

Hair loss

General weird achey type feeling in my body that comes and goes

I was referred to a liver specialist at manchester royal infirmary who has done a lot of work in the field of PBC. He basically said he'd see me once a year to check my LFTs but that in his opinion the funny symptoms that Ive been having are not PBC related.

I suppose my question/concern is, how do they know for sure that the PBC hasn't progressed past pre-clinical stage without doing the liver biopsy (a procedure that I haven't been offered).

Best iwshes

Nicky

[shonaf in reply to Hidden]

Thanks Nicky,

I will see what my GP says, I too have a raft of strange symptoms to the point of me thinking it was all in my head. I will see if I get a referal nd take it from there. Will keep you posted. xxx

[skywalker in reply to Hidden]

Hi Nicky

I am in the same position as you, but I'm off to see my consultant again because some are saying that pbc is being diagnosed now in patients who have no symptoms and normal liver function tests.... but on the AMA antibody only!!

I totally understand your frustration, I haven't had an mri but was offered a biopsy which I refused at the time. I think I would like an mri scan first. My hospital is Addenbrooks in Cambridge, they discharged me in 2010 but said to go back if any problems arise..... so I'm going back..

[Wendom]

Hi shonaf good look on Tuesday keep us posted Wendy x

[skywalker]

Hi Wendom

I have positive AMA antibodies with normal lft's! But itch and suffer fatigue. My consultant discharged me saying have your bloods checked annually. I hate being in limbo, I have pain in my upper right quadrant which no-one in the medical profession takes seriously. I've just had my gall bladder removed which was diseased with NO STONES.

Do you receive the bear facts from the pbc foundation, there is an article on page 4 written by professor James Neuberger who claims that pbc IS being diagnosed on AMA patients who have NO symptoms and Normal LFT'S!

I am waiting for Collette from the foundation to call me regarding this article! Then I'm back to the docs for a referal back to my consultant at Addenbrooks Hospital in Cambridge. If we have the earliest stages then I want to start the medication, I have two young sons 10 & 8 and NEED to know whats what!

I'm 46 nearly 47 and my hands, arms and torso itch really bad sometimes, but my doctor has said it's all in my mind, that I read and worry too much, and put it down to my depression/Health anxiety!

I've never really trusted my doctor as he doesn't know how complex pbc is! I on the other hand know that you CAN have pbc with NORMAL liver function and NO symptoms

I understand how your feeling because I'm in exactly the same boat! I hope we both find out soon, in the meantime try not to worry and let me know if you determine anything

Take care xxxxxx

[Wendom]

Hi sky walker I know what you mean about being in limbo yes I do recieve the bear facts I contacted Colette when I was told in march 2011 I too didn't trust my doctor anymore because I have since fond out that my AMA was positive in 2006 and 2008 I was only told in 2011 when I got really sick .my old doctors completely ignored these results even though I had been in repeatedly complaining of fatigue for the last six years I had the itching on and off but not severe but thought nothing of this I was actually diagnosed with chronic fatigue syndrome I always knew they where wrong I'm waiting on results of latest liver function tests I too was discharged from the consultant and told to come back when liver functions change I worry my liver is being damaged more as I was refused urso I have shortness of breath quite bad severe salivary gland pain it hurts like hell to eat ,that awful upper right pain I swear I can feel my liver when I breath in in by back behind my ribs also I have prominent viens showing up in the area at the top where your diapram and your ribs meet I can feel tender viiens here ,also I can see them I keep getting a little round bruise in this same place that keeps reappearing in this area I get swollen ankles I'm sick of being so tired I have had a diagnosis of possible sjogrens but it doesn't show in my blood I asked if I could start the urso but that wouldn't let me have it even though the consultant said I definitely had pbc I recently asked my new doctor about the itching I get and he replied it's just dry skin I'm sooooo frustrated I too am 46 almost 47 by the way it's my feet and upper thighs that itch the worst I hope you manage to get your referral back to the consultant and get on urso I hope you have more luck than I did I'm considering going to see my local councillor about the urso situation although I don't know if this will help feel free to message me anytime and let me know how you got on good luck Wendy x

[skywalker]

Hi Wendy

All I can say is OMG where do you live? Your treatment of possible PBC sounds quite disturbing sweetheart, I can't believe they have refused you the Urso, it could halt stage one they make me so mad, they have no business refusing you especially when this disease is so complex. Collette has not got back to me yet regarding the article in the bear facts. You should take the bear facts with you to the hospital, I am!!. And point out resent research on pbc and talk about what professor James Neuberger says, I'm also doing that!

Collette asked me to write to her about this very question so she can broach it with the professor, then she said she would contact me again. What did she say to you Wendy?

I'm also pointing out to Mr Consultant that I've seen posts that state patients have been known to be at stage three with pbc, who have normal liver tests and no symptoms and write down their reply, I am!!

I would urge you to go back and see your liver doctor and point out to him/her that you speak with real people who have pbc or ama and know how complex and diverse this disease is... and that you are not satisfied with the outcome!

I'm seeing my doctor on the 6th Sep to ask for a referal, that could be a long wait! but I've got the bit between my teeth now, and I want more information and that urso..

I will keep you posted honey, take care

xxx

[duvetgirl]

I was told 6 years ago that I have ama . I have nother been able to find out whether this means I have pbc or am likely to get pbc or really what being positive for ama actually means. I spoke with my gp this week who did a lft which came back normal. I have to see him again to discuss further plans but he did not seem t to know much either. It is really frustrating not understanding what test results mean and having this hanging over me. It Ian good to see that I am not alone in this too.