Everything was in the "normal" range except my mitochondrial antibodies were rather high which seems to indicate high chance of having PCC. As a naturopath I opted for natural healing and after six months is when it was higher as I currently stated. My Healthy lifestyle did not help to prove my point to the Allopathic physician. My liver biopsy said minimal inflammation and a note from radiologist said no evidence of primary biliary cirrhosis. Dr. Is hard to reach and has the nurse make all calls. It is very frustrating. Looking for second opinion. From all I read it seems once on meds you can't get off. Why? Nurse said if you don't go on meds disease gets progressively worse. What Are your opinions. Afraid not to take now. Thank you.
Not sure why I was put on meds: Everything... - PBC Foundation
Not sure why I was put on meds
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44 Replies
•
Hi Francine,
I do have postitive AMA (84), had (keyword: HAD) elevated LFTS and my liver biopsy proved to show mild AIH/probable PBC. Several of the bile ducts are missing, but in every reference to the lab reports, the biopsy samples noted 'mild'. I have not yet been put on URSO or steroids, given my change in diet and the fact my LFTs have gone back into normal range. After showing elevated LFTs for several blood tests, I went Gluten Free, am eating less fats, trying to eat less sugar (unsuccessful), have nearly eliminated all alcohol (a small glass of vino from time to time) and am trying to stay active. My doctor hesitates putting me on drugs because A) he wanted to know if a change in diet would help steer them back to normal while my numbers are still relatively low, B) he wasn't sure if we should go the steroid route first for the AIH, start URSO for PBC, or run a course with both. Together, we opted to wait to discuss it in the fall and see how the numbers look. I/we know it is somewhat of a risk NOT to be on meds to slow down progression, but he feels as long as I am in the normal LFT range and don't have raised ALP or BILI, then I should not be at a heavy risk for advancement - yet. His thinking is without drugs, numbers will start to rise naturally and I am being tested every six months --- with drugs, numbers may not rise because I may not be progressing and could potentially damage my system more on meds, OR --- the drugs could first drive up the numbers then possibly go back down, masking the progression. I do trust him because he made the diagnosis quickly by requesting AMA bloodwork on the first visit, has personally called to check in and took the time to read word by word, the lab and biopsy report and make sure all my questions were answered. He seems to be a 'rare find' in the world of busy doctors.
I do hope you'll seek a second medical opinion, as we all need to feel comfortable with our treatments and meds. Good luck and please keep us posted.
• in reply toJennerLayne
Thank you for your response. I am a naturopath and opted for diet. Tried for six months and only change was mitochondrial antibodies. He forgot I was going to try diet plan and had nurse call me back to continue up the meds. There's more but will write back after work. I need a more caring doctor! There are others but don't know who to chose. Where do you live? I'm in NJ.
• in reply to
P'S I was itchy long ago but was told it was stress by another dr. It has since subsided. I am a but tired but exercise helps. The report from liver biopsy say no sign of PBC. But he ignored that and was never Sent that report. I asked for it.
JennerLayne• in reply to
I'm in Georgia near Hot-lanta.
• in reply toJennerLayne
New Jersey. Need another doc around here.
PatinJersey• in reply to
where in NJ are you? I'm in the Red Bank area. Down the shore.
• in reply toPatinJersey
East Brunswick ~ neighbor!
PatinJersey• in reply to
Very close!! I see Dr. Marzano at Red Bank Gastro.. wonderful guy. Even lets me email him!!
• in reply toPatinJersey
Hi Pat. Thank you so much! We have lots in common. Close in age. The only think high is the mitochondrial antibodies. liver minimal inflammation. He gave me lots of time in office but forget the phone! Constant conversation back & forth with nurse.Pills are huge.
PatinJersey• in reply to
Yeah, those URSO are horse pills. But, I take em and forget em. I had minimal scarring on biopsy. Guess I had it for a while, but, still the outlook is good. Best of everything. Write anytime! I need support too!-- Pat
• in reply toJennerLayne
I need a doctor like yours! I don't even see the tests on my report that you mention. What is AMA? What is LFT? Please read my post. I am so afraid. Time is ticking. Thank you.
It sounds like your symptom free at the moment. I was diagnosed after extreme fatigue and itching, my lfts were grossly abnormal and that was 16 yrs ago. No- one knows for sure how long you will be symptom free but I would take the meds. Urso in particular shows that it slows the progression of Pbc according to research.
I think I know what you mean, why take meds if you feel ok and lfts normal. I've had no side effects on them and nobody I know with Pbc has either but I'd still take them in your situation. Take care
• in reply tospoul
Hello spoul, as probably said previously, your path of PBC seems quite like mine though I have only been diagnosed with PBC not far off 3 and half years now. Your mention of the '16 yrs' lifts me once again as it has done before.
spoul• in reply to
It's really not as bad as you first think. I scared myself to death trawling the internet when I was first diagnosed, I think that's part of accepting the diagnosis. After that a joined a couple support networks and found that helpful however everyone is so different and they were all older than me. Then I chilled for a few years when I realised I wasn't going to die or need imminent transplant.
Now after being told my progress is slow I just take each day as it comes even though it's usually in first gear haha x
• in reply tospoul
Yes. I am researching and researching and so worried about the future. Think I just need second opinion real fast. No problem with the drugs. Just realize I'm a naturopath and I failed the 6 month "test." ;(
• in reply tospoul
Like the last bit of your response spoul, 'usually in first gear'. I have often found since diagnose that it is the GPs and the nurses/healthcare assistants who can be the ones that tend to cause more stress than the actual PBC.
I was not happy with my previous GP surgery and 15mths ago now switched. I have been finding that the 3 GPs here, the newer one of 6mths doesn't seem to have a clue (she rang me later last year to tell me I had abnormal LFTs, hadn't read my records to find out I had PBC), the male GP I saw regarding a different issue he doesn't seem to know much re PBC and the one that I saw on registering, although she has taken an interest and read up about PBC she as my sister once said, she seems very quick to suggest that she'll send you to hospital. (I was discharged from hospital back in 2011 at my request with the intention of in future returning if things were not going well. But so far been quite good.)
I think the more time passes the bolder for want of another word is what you start to get. I adopt the way of thinking that it is far better to live the life now as opposed to worry about what may or may not be as that saying goes, "A life without risk is no life at all".
• in reply to
I am encouraged by your take on this. Ty
• in reply to
I think with myself by saying that I try to crack on with life with PBC francineadrianne is because once you see yourself that you have something that you are stuck with for life and at present cannot rid yourself of it, there is no other way of thinking but to try to get on as best you can.
PBC can halt and it varies greatly between everyone but the consensus appears to be that more people get by with PBC than don't these days. I think it far easier to deal with things as and when as opposed to worrying unnecessarily about them as they may never occur.
PatinJersey• in reply to
Hey Peridot!
Always, informative info! Thanks!
Right now, I don't stress and look things up anymore. The more I read, the worse it becomes. It's like we have a self-fulfilling prophecy going on with this 'condition'.
I learned long ago after bad post partum that anxiety and hypochondria feeds itself like a hungry pig. I've learned to let most of my everyday symptoms go.
I don't believe I have any symptoms yet. Had all them before in the normal road down aging, lots of physical work, and normal tension.
I'm on URSO, and it doesn't bother me at all. Helps digestion a lot!
So, a little bit of acceptance is a good thing, I think. And this group too. Don't want to get involved here too much.. because I feel this will define my life-- a life of daily 'kvetching' about PBC.
Thanks so much for your words of wisdom. And I am interested to know how PBC can halt.
Thanks! Pat in NJ
• in reply toPatinJersey
Hello Pat in NJ. So glad to read that you also try to always be positive with PBC.
If I didn't itch at night I'd not know I had PBC myself. I have tried taking the urso in various quantities and timelines in the day to see if it makes any difference to the itching but afraid not.
Apart from minor side-effects on starting urso back in 2010 I've not actually had any problems. The only problem I would say for me was having to accept that I would take this urso for the rest of my life. I always withdrew from any suggestion of taking any medications over the years and thought I was healthy.
Apparently for some PBC can come to a halt for some. I reckon it is due to less production of the AMAs at that time. Some end up having normal LFTs on urso and I expect you could then consider those people to be in a sort of suspended mode. But with PBC as we know, once we have it, we always have and there doesn't seem to be a guarantee.
I still stand by my way of thinking that the way forward with PBC would be to attempt to stop the anitbodies and that in turn would mean less damage.
• in reply tospoul
Thank you spoul! What is lfts?
• in reply to
LFTs are Liver Function Tests. They are the bloods that are taken to ascertain readings that can show a doctor how well we are doing with PBC. Two of the bloods taken within the LFTs are usually ALP and ALT and usually abnormal for most with PBC but some do have normal LFTs with PBC with or without taking urso.
• in reply tospoul
Thank you spoul! So encouraging that your diagnosis was 22 years ago & you're doing fine.
• in reply tospoul
Thank you for your advice. Greatly appreciated!
Hi Francine Adrienne,
I have been diagnosed as 'pre-symptomatic for PBC' (which is not even a strictly recognised diagnosis) which plays havoc with insurance companies, yet I only test +ve for AMAs (have done for 22 years) and have no symptoms and lfts have always been perfect. So, I'm broadly sympathetic to your situation. However, from you post above, I'm not quite clear what your readings are. Which was higher, the AMAs? or lfts?? Why not post your lfts and the changes over the 6 months. If you have not got the details, ask for a printout of all you results - if you are in the Uk you are entitled.
I would also join the PBC Foundation - there's a link above - and ask for their handbook. Also checkout the Liver North site and get their CD. I would also read back through as many questions and discussions on here as you can bear, and try following all the links to articles and papers about PBC (but I'd stay away from a lot of the general PBC stuff that's online). That will give you all the info, and introduce you to the wide range of symptoms, diagnoses and treatments etc, etc, that is PBC; you will see that, for example: some people in my situation have no diagnosis - even some who have symptoms - while others are on urso. It seems like there is no clear path, and it also makes me worry how much some consultants are certain about what they are doing.
I don't know much about naturopathy, are you aware of the dietary deficiencies that can result with PBC and are you sure you are catering for them in your diet? I hope this helps, and good luck.
• in reply toGrittyReads
Thank you so much for your response. What is AMA? Don't see it on my sheet? Or lfts? I have both tests. They seem different. Wish I was is UK. Sounds like doctors are more cooperative with their patients. What do patients with PBC lack? Naturopaths believe in curing through natural holistic whole foods. People have been cured from cancer with raw vegan diets. But I did fail the 6 month 'test' it seems.
• in reply to
Hello francineadrianne. The AMA stands for anti-mitonchondria antibodies and apparently around 95% of patients with PBC have a positive reading. Some patients don't show AMAs though and it's said that if a PBC patient has another AMA check at some point after diagnosis of PBC via these AMAs there can be a very varied reading.
Tae it for me as I am in the UK, I don't think my pathway to diagnosis of PBC was as straight-forward as it seems. I had 2 symptons back in 2010 (itching and fatigue). I had blood checks which found abnormal LFTs. I had repeat bloods for various other things and then was asked to go for an ultrasound scan. The scan is easy and quick and it only took 5wks from the GPs referral. This was in July 2010. The GP then undertook further bloods (final one he did was for copper that can show Wilson's Disease) and by that time it was Aug.
He referred me to hospital then for my first appt at hepatology. This appointment from referral took 13wks which is lengthy in reality. Meanwhile I was itching still and all I could do was wait. The appointment came and then I had the AMA blood check that day at hospital and had a further 5/6wks before I got the diagnosis of PBC.
I find the NHS system can be degrading. On my 2nd hospital appointment after the GP informed me I had PBC Dec 2010 and I started on urso, I was shouted from down a corridor when the doctor was to see me and then I did not know where I was going. I decided that by the time my 3rd visit came about during 2011 that I did not want to keep going and asked for a discharge when I saw the doctor. I find it tiresome visiting my GP, the reception is open plan in the Waiting Room and all the other patients overhear what is being said but it is the NHS. (I had an ENT appointment during 2013 under the NHS but I chose my Choose & Book appointment with what is a private hospital but they see NHS patients. The setting was so different from an NHS hopsital and staff were so respectful, there was such a big difference.)
• in reply to
I so appreciate your extensive reply. Never heard of this disease and now I'm amongst many. I am glad I wasn't put in the hospital. All outpatient. Strange he went right for the Liver biopsy when I was asymptomatic at the time. Will get my meds. Naturopath have a thing for self healing but it is good it is treatable.
Hi grittyreads
Have you got the AMA and M2? And is it a strong reading? Xxx
Hi Skywalker,
I've got AMAs, but I've no idea if it's M2 and I've never been told the levels of the AMAs - they were noted over 22 years ago, and then over 6 years ago, but as far as I know they are not repeated. I keep putting off going back to my GP about a reassessment - it's silly, but I'm afraid. As I don't have actual symptoms, I just seem to want to keep on burying my head in the sand. I know I have to do it, but every time I start pushing myself in that direction, then something to do with work, life or friends/family takes centre stage. Timely nags please!!
PS sorry for delay in replying, our neighbours' tarmac delivery truck drove off without lowering the tipper truck, and snapped our BT cable!! No phone or online for about 5-6 days ... not many internet cafes in this part of Devon!
can't say I blame you, I mean who really wants to know! I'm going to question my diagnosis, and still don't feel satisfied that it's correct. I have ++positive AMA & ++positive M2 and a ++something else I can't remember! No numbers just ++ ? But my liver scan was fine as was my LFT'S. But.... I do have fatigue, achy bones, viltiligo, dry eyes, mottled palms and digestive problems, and pain on my right side which hurts when I inhale. Does this warrant a diagnosis? I don't know because of the normal LFTs!!! But.... alas... I'm seeing yet another liver doc next week... it's all fun and games. lol. My depression has been bad this week which helps nothing. In my head/mind I can't accept it. I'm writing down everything I want to ask next week and hope things become clearer. Talk again soon chuck xxx
Hello francineadrianne.
It seems that there are varying opinions with regards when someone who is diagnosed with PBC starts on urso. Some who are asymptomatic, that is with no symptons of PBC and normal LFTs can just be monitored. There are exceptions to the rule and only the doctor can decide this.
I presented to my GP back in early 2010 with itching (had fatigue but never thought anything of it). My LFTs (liver function test) was found to be abnormal and it went from there. Before the end of 2010 I had had the AMA check and found to have a 'high titre' as the letter from consultant stated and was started on urso.
Unfortunately once you take urso it is unlikely you will stop taking it. It adds additional bile to the system that aids digestion better. Bile that we produce ourselves can be a bit compromised due to bile ducts being under attack. Urso is thought to improve bile flow.
You didn't state whether your LFTs were normal or abnormal. The AMAs though a marker for PBC if you are positive aren't exactly an accurate without other factors of the disease (ie abnormal and rising LFTs and symptons - I just have the itch these days and the abnormal LFTs). If a doctor is any doubt with regards to a diagnosis of PBC a liver biopsy is generally taken.
I thought I ate healthily, lived healthily never having smoked and only drank on odd social events but I was still struck by symptons of PBC when I was 46. In the 8mths priroto diagnose I changed certain things and in the 3 months prior to my disagnosis I did actually have my LFTs decrease slightly naturally but they improved geratly in the first 6 months of taking urso.
I see urso as more a supplement to the body as opposed to a medication as such as after all it is a component of bile. I myself would prefer not to take urso every daily for probably the remainder of life but I have accepted it over the last 3yrs I've now been diagnosed as I know I feel far far differently from back in 2010 when I didn't know what wa wrong with me.
Hi francineadrianne, where doo you live? I live in Basingstoke, HAMPSHIRE, my doctor is Dr Ramage and he is one of the top specialists for PBC, our condition is one that progressively gets worse and urso helps to slow this process down and in some cases stops our condition worsening. There is no cure for PBC and I'd say keep up with your meds as it's important to halt/slow down the damage to the liver. I hope this helps.
• in reply toLynne-k-g
Thank you Lynn. I live in East Brunswick NJ.
My doctor seems to be going by the mitocondrial
antibody which has risen. My liver seems to be fine.
Hi Lynne. Thank you for your response. It's great about this med. But also sad. Many have reversed serious disease by raw food diets. Cancer & MS. I have been researching. But I am afraid to wait. Hope I don't lose my hair. It is thin enough as it is. Have you reached any stages? When were you diagnosed? I live in New Jersey.
GrittyReads• in reply to
Hi,
There are a whole crowd of people who post on here who are from New Jersey or nearby. Why not post another message on here, asking for other NJ people to answer you, you might find there's a local support group.
Also I do think you need to find out more about the grounds for your diagnosis. You don't actually say if your lfts are abnormal, but if they are then 'yes' you need urso, but if it is AMAs alone, then they should do other tests: ultrasound, fibroscan, MRCP scan, MRI, even a biopsy. Even if they still say it's PBC and uros is prescribed you deserve to be checked out for all the other conditions that AMA subtypes can be linked to. Do you have any symptoms of PBC? If not, why were you checked - my AMAs were noted quite by chance from routine blood tests.
• in reply toGrittyReads
Thank you for your response. I think my doctor is being cautious. I have had the biopsy and CAT scan or the MRI (which ever is worse radiation ;( Liver is "fine" He seems to be going by the AMAs alone, specifically the mitochondial antibodies.
Itching was a while back and misdiagnosed as stress. Have been on and off tired. Thought that was stress. I had a new post why I was checked as so many ppl. wrote back. Thank you again.
GrittyReads• in reply to
Hi Francine,
AMAs, are 'antimitochondrial antibodies'. As you will know, we have - or produce - antibodies to attack bacteria or pathogens that get into our system, and which would harm us if the antibodies did not control them.
PBC is one of many 'autoimmune' conditions, where for some reason that is not understood, our body produces antibodies that attack our own cells and systems. AMAs are believed to attack the mitochondria that are in the cells that line the bile ducts of the liver. Mitochondria are microscopic organelles (like baby organs) that are found in the nuclei of virtually every cell in our body - I'm sure you will have come across them when you studied basic human biology, and cell biology. They are essential as they carry out the controlled release of energy from glucose.
It is not known why AMAs should attack the mitochondria in the cells of the bile ducts, but the attack gradually destroys the bile ducts, so that bile cannot flow from the liver and aid digestion, nor can the wastes the bile ducts usually transport be got rid of via the digestive system. The destruction of the bile ducts also leads to general fibrosis and scarring in the liver, so that the liver finds it harder to do all its other vital jobs.
I think it would be a good idea if you read the basic accounts of PBC that are on the PBC Foundation website, as this will cover some of this info, as well as other aspects of the condition, it will also give you name of the liver chemicals that are tested for in the LFT test.
• in reply toGrittyReads
The day I had the AMA blood check at the hospital back in late 2010 I also had the ANA one too.
I have however noticed when I was looking back on the blood reading notso long ago that I have had others in the past too.
On checking all my other antibodies checks were normal, just the AMA wasn't.
There seems a bit of a variant between Health Trusts in the UK. Mine (East Lancs), the GP said he had exhausted all he could do for me back in 2010. It was the hospital consultant who undertook the AMAs.
As I understand it, the AMA isn't routine without cause.
Wow! What a wonderful support grouo. Woke up to see the last response and only replied to that one. My doctor never reviewed the tests. He is from the old school of thinking allopathic doctors are God. I got the reports and am studying them . It is all based on the mitochondrial antibodies. Will take a better look and get back to everyone. Thank you so much. I am trying to.look at it as a supplement as well. I do need to find another doctor though.
Ok here is the run down I am a Naturopathic Doctor the med they put you on increases your bile and flow to keep your liver healthy! Ursodial can halt the disease! I always opt for diet changes and do the research by knowing what can hurt you! Catching this early prevents end stage and liver transplant! Don't be dumb and think you can solve everything natural as I have seen many people get sicker than they need to. Arrogance will kill you quicker use med's and natural health together it angers me to think Allopathic or Naturopathic has all the answers I beg more people to use the science Modern medicine brings us complementary to natural some
herbs can be hard on your bilinary system and even me as a Master Herbalists is very causes because not all the science is known on them! Milk Thistle has had some hard facts so do your
research! There are several of us that given the early diagnosis and never have to see it progress by taking a pill that is very natural by the way "bile salt"would be happy unless you would rather wait tell damage is done and then you have no choices! No one know progression or how this goes everyone is unique in this! Get a new doctor they are out there but the nurse was correct you will progress ! Best of luck be smart and educate yourself on sites like this as the internet can scare you to death, but maybe you need some scaring to see this is serious and life changing not something you can fix in your own by earthing right! Something you might view as no big deal like a Acetaminophen can toxic to you but no big deal for someone else! Be safe and smart please.
• in reply toMickey1964
OMG ~ You are a GODsent! I am a Naturopathic Practioner as well, but new at this and never heard of this disease. Please read my latest post. I am listening to you. My prescription is waiting at the pharmacy. I just didn't know if I was ready. I thought the last 6 months would prove something to my doctor and he would ask me to be his naturopathic partner (silly me). I was shocked and disappointed to see my M2 doubled! It is 102. So sad. I will get over this. I am strong. Have lived through melanoma, cervical displasure, (more I am sure I can't think of right now) and even a car accident that someone else may have been dead. It is just not my time 
ty. Where are you located? Need a second opinion in Jersey as I do not like his bedside manner. I think he is tired of his practice.
I am writing in response to GrittyReads (above) suggesting you locate a NJ support group. There is a support group in Southern New Jersey according to this: pbcers.com/support/local-gr... Contact Marlene (856) 468-2883, MARELENEfromNJ#webtv.net Good luck!
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