Hi everyone, I'm gonna apologize right now cause I'm venting. 😣 You don't have to read it. And thank you to the ones who stick it out. I'm sure my story is a familiar one.
Being accurately staged? Is this something that can be done? I read about so many of us who have been told one thing by our doctors, only to discover another after having other tests or scans etc.
Being on this forum has been a godsend! I've learned so much here. Thank you to everyone and anyone who took the time to post to me over the years. I know many of you have been on here for several years. And some of you just a few. Still, you all work hard to educate yourself on this disease. You share your own experiences and even in your own fear and anxiety, have taken the time to bolster up and encourage others❤❤. Thank you!
I've learned on here, and on other liver disease forums that liver disease can be a silent killer. Many doctors are still "old school" in their thinking and even in their treating of PBC. "My doctors" are those kinds of doctors. My doctor didn't even know what Ocaliva was. She'd heard of it.
Since 2016 when I went to a GI for stomach issues. I've had loads of labs, ultrasounds, CT'S an MRCP, an ERCP and my doctors gold standard and definitive PBC staging procedure, a biopsy. You all know the truth about these long used procedures for staging PBC.
After looking at my medical history going back to 2008, my hepatologist told me that I probably had PBC for 10 years, maybe longer I just didn't have issues where I needed labs before 2008. Anyway, then he told me that going off my biopsy that I was early stage 1 if I had it at all cause my biopsy didn't show any PBC. For 10 years the only thing elavated on me was my Alk-phos. I Won't ever understand why my doctors didn't give me a heads up about my liver in 2008, 2009, 2010, 2011, and 2012. EACH of those years I had different surgeries, from appendectomy, hysterectomy, gallbladder, to hernia repairs. Each and every time my labs were drawn for those surgeries and during those hospital stays, and also the many lab draws taken subsequently at my follow up visits, NO ONE told me my liver enzymes were elavated. And they were. I guess I'm just mad about it now. Well, more like thoroughly disappointed.
I've been on URSO for 2 years. It's never brought my alk-phos to normal. That's the only lft that's been elavated. Recently my liver enzymes have been climbing. Ast, alt, and alk-phos. My doctors are like "Eh... Let's watch them." Like it's a sporting event. Lol, Boo when they go up, yay when they go down. Only so far, they aren't going down. That's not the frustrating part cause you've all told me, this happens. What's frustrating is them thinking I'm an early stage 1 patient and this is happening. Them thinking and acting like I've got 20 years to play with here. I don't think I do. I dont "feel" like I do. I just really don't know. I want to know.
What can I present to my doctors to inform them that labs and ultrasounds are not a good indicator of PBC progression? And that biopsies are no longer the gold standard for staging PBC in a person? And what tests or procedure should I be asking for to REALLY know where I'm at with my PBC?
I'm sorry if you'll be repeating advice you've given me before. Please, bear with me. I am listening. But my doctors are not.
Stella❤❤
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Hi Stella , first of all I want to say I understand your frustration, having been there, I had a liver transplant 3 yrs ago and pbc returned to my new liver within 2 years so I’m kinda experiencing what you are feeling for the 2nd time, the only thing I can tell you is 1st time around everything just sailed along until my bilirubin levels started to rise and albumin levels fell (I think) and then in the words of my doctor the red flags were raised, all other lfts were up but these two were the ones that raised the alarm, I hope you get some answers soon , take care 🌸🌸
Hi Stella, I was diagnosed 14 years before my transplant and I was told I was classed as a non responder to urso although I still took it as it was the only thing available then. I itched badly for about 10 years before transplant and my body was covered in spots but this has gone after transplant 😁👍🏻 , mentally I’m so much better now the only bad thing is the fatigue which is overwhelming at times, I’m back on urso again and don’t really know what happens next, get conflicting information depending on who I ask, take care 💕
Thanks for sharing❤ Happy for you that you got a new liver and even though the stupid disease is back.... At least you have many years ahead. Hopefully they will find a way to stop autoimmune disease in its tracks!! ❤❤
I know it is all very scary and confusing. I had my appointment with my consultant this week and he confirmed that I am only a partial responder to Urso as I have been on it a year now and although my levels have reduced loads since diagnosis they are still too high (ALP: 280 GGT:369 ALT:223). It is really disappointing and means starting another medication. My ALT and GGT had been much lower earlier in the year and when I said I was concerned that they had gone up again he told me to stop looking at the numbers! He said that my liver is not normal and that the levels will fluctuate and not to worry about it. Easier said that done!
I had a Fibroscan and was told I am at stage 2. The consultant just said that this was a great result as it means that I don't have cirrhosis. Although I appreciate that fact and I know a lot of people are much worse off he doesn't seem to get that my main fear is not that I have cirrhosis but how soon I am likely to get it. He just said try not to worry and that I will be coming to him for many years. I have only just turned 40 so I hope so too but I worry about how quickly things will progress and what my quality of life will be.
Sorry, I am venting too now. I totally get your frustration, it seems that it is difficult to stage the progress of PBC and even if they can you still don't know how fast it will progress for you as everyone seems to be different.
Sorry, this doesn't really answer your question but I just relate to how you are feeling and what you are saying.
My alt is running high now 50 used to be 42 normal is 9-42..just emailed my lab test to my new dr let’s see what he says..I’m bit worried tho I’m also prepared for future consequences🤗..
Vent as much as you can then think positive to relax your stress💐🙏
I fully understand the need to vent. Sometimes it is like banging your head against a brick wall when dealing with doctors. I wished I understood their little sayings that they share such as "this patient has a good understanding of her condition" I wonder sometimes if they actually mean she has spent too much time on google! There is a document that is 28 pages long. It was published last year and it is clinical practice guidelines. Although these apply here in Europe I am sure there is something similar in the USA. I wonder if you are able to wade your way through it you may find something that will help you in your quest with the PCP. I believe there is also something similar on the PBC Foundation web site in the member's section.
I think you could also probably approach Intercept Pharmaceuticals directly as Ocaliva is fairly new they seem to have been quite proactive in the States. I googled and found this link.
I met a couple of Intercept chaps whilst they were in the UK visiting Oxford University Hospital who were there in a professional capacity and seemed very engaging.
Hopefully something from the above will set you off in a different but productive direction.
Thank you for that information❤. I have to be honest, reading part of that scared me all over again. But, it is what it is. And, I still need to read the whole thing.
Since there is no other hepatologist near me where I'm covered by my insurance, I've made an appointment for a 2nd opinion with a GI that has and uses a fibroscan with his patients. For now, I'm on a strict diet. Trying to lose enough weight to be able have one.
I think you can also see if there are any facilities that might do a MR elastography scan, I read it is more accurate than a fibroscan & does not have a weight limitation.
Hope you get some answers to put your mind at ease.
Thank you for that link. Found a facility near me that uses MRE. Now I've got the nervous stomach. I want to know where I am at with PBC..... and now I'm gonna find out. 😓
Gonna talk to my doctor next Friday at my appointment and get a referral to have one.
Thanks for this info. The hep I’m waiting for serves in SIG (special interest group) for NAFLD at AASLD. I think he will be on top of everything. If I can ever get to him, lol!
HealthyChik...thank you. I’m so ready to meet this man. Never thought I would be excited about a dr. But I feel he is just what I need. Will definitely share my experience with him. If you’d like to read about him:
I may have. I was looking for something earlier in my email. My husband asked “how long is it going to take you to look through all those?”, lol! My poor phone is overloaded with any & everything on pbc, labs, tests. You name it😆
No need to feel bad about being frustrated as I feel we all are in that same boat hence why I have fired 3 gastros now! When I know more about my illness than my Dr, there is no reason to pay him. They only know how to treat us with urso and now ocaliva. They don't know how to rid us of this illness so all they are doing is what they learned in school, "PHARMACEUTICALS. I mentioned in a previous post how one Dr asked me if I wanted to pay his bills so he had more time to study my disease and possible cures for it when I asked him about CBD oil and the anti-depressant drug. But yes. This is a "Let's wait and see game" for them unfortunately as they do not have the right answers. It doesn't make them bad people, it is just bad for us that no one has the right answers yet.
morning.As Donna said, dr s don t know how to cure the illness.They only give urso and ocaliva.
in the past days i am reading about the activation of out killer T cells (natural killer T cells -NKT) witch i understand that are responsible for distroing the small ducts.
I also saw that NKT are triggered by "Novosphingobium aromaticivorans" bacteria
I understand that this bacteria is in our body and i belive that is the triggering thing for Pbc.
Now i want to know if i have it for sure and if i can rid of it.
I also want to know if i can treat it and if i will have it no more , the NKT cells will stop distroing my small ducts in my liver.
I think that we should all make some research obout this bacteria and open a new chapter for this illness.There are many studies on the net about this bacteria and the damages that she is doing.
For Example at Milan in a study: All 79 pacients with Pbc had Novosphingobium aromaticivorans
Another study: When the researchers injected mice with the bacterium, it prompted the production of autoantibodies against the mitochondrial enzyme complex in similar fashion to that observed in patients. This triggered chronic autoimmunity that damaged small bile ducts in the animal's livers. The autoimmune process was mediated by T cells (a white blood cell important to immune response), but early disease onset required the participation of Natural Killer T cells after they selectively recognized glycosphingolipid antigens on the cell wall surface of Novosphingobium aromaticivorans.
Other studies are sayng that also H priory bacteria can trigger pbc or more important can trigger reaction for mithocondrial enzime and i think that as long as the bacteria is in our body the Nkt s are in reaction with our ducts in liver.
My thinking is that Urso/Ocaliva is only flushing the liver and is lowering the effect of our Nkt cells actions but this is not what we really want.
i think that we want to stop Nkt to do what they are doing
So if Nkt is triggered by a bacteria like :
Escherichia coli
Mycoplasma.
Bogdanos et al.
Helicobacter pylori
Novosphingobium aromaticivorans.
that are the major targets of cross-reactivity with human pyruvate dehydrogenase in PBC, strengthening the fact that microbial exposure may be instrumental to the appearance and/or maintenance of AMA responses by a cross-reactive mechanism , than we should test ourself for all this bacterias and cure them.
Last year in march i found that i have Ama positive and also had ast and alt high.
At the same time i found out that i have H pylori bacteria at stomach endoscopy.I had treatment for H pylori and surprise: Ama went from Positive to Negative.
It is clear that Ama witch is in close reaction with NKt are triggered by something witch can be different for all of us but the trigger(a bacteria for example ) keep this reaction and as a result our small liver ducts are destroied.
As i said, i think we all need to know what bacteria from the list we are positive at and cure it.After that i think our Ama must go to Negative.
Urso is only slowing the progression.We need to stop the progression
The liver is the only organ that can regenerate itself.If we could stop the agression of the nkt, i think that is the answer
This is very interesting information and makes sense. How did you come by this? And I wonder why the consultants haven’t mentioned it. I think it’s worth Robert at the PBC foundation would find it interesting for publishing in Bear Facts
This reasearch paper was 2009, so nearly ten years ago, so the theory has been around a while, you have to ask yourself where are the newer trials that tested the theory , is it to come perhaps or was it discarded as not a potential cause/cure. If you find anything newer I’d be interested in reading it.
I’ve felt for a while that a bacteria moving from the gut/intestine was a trigger, I remember having elevated blood results years ago that indicated I had an infection, however as the doctor said without any symptoms transpiring we don’t know what to treat, he said it would either start to show with symptoms or your body will fight it so off I went on my way, with a low level infection that was never treated and one that never gave me any symptoms. Fit and healthy then for 15 years , not even going to the doctor much that I can remember, until 2009 when I was diagnosed with pbc and that was found by chance not symptoms Id gone for an abscess..
i take urso now and will forever.The problem with pbc is that it can t be cured(for now).Who has it must go with urso all his/her life.I only make my tests every 3 months.My Ama is now equivoq.It was positive....after that equivoq...than negative 2 times and now equivoq.All thest labs for liver are in range.Pbc is a silent killer..I will see in the future what bacteria i have and if it triggers the Ama.If Hplyori is again(i had it last year) will make a lot of sense.If not i will try to find what is the trigger.(other bacteria)Something is making the Ama to rise.
The dr who is working on auto immune disease got noble prize for finding a cure for some cancer through immune system..it is near impossible to reverse once autoimmune triggers...only hope is drugs like urso and oca I guess! Problem is you can’t destroy nkt with out them we will be sick as dead
That’s very interesting because I have a same experience with a urinary tract infection with E.coli, after treatment with antibiotic. AMA titer went down from 1:320 to 1:20.
Sona_akb...interesting you mention that. Son after PBC diagnosis, I had a UTI. it was a bacteria called enterococcus. It is a bacteria normally found in the gut & intestines. It says people with autoimmune conditions, people who have had root canals or been in hospitals are susceptible & it can end up in urinary tract. Wasn’t hard to clear up but it is resistant to many antibiotics.
Today I was reading a paper about it, some surface antigens of bacteria looks similar to that of bile duct cells. I don’t know treating these conditions make any improvement in pbc or not.
Gosh you have really had some bad luck with your health. I hope you get some satisfaction. Some good replies with interesting reading especially with reference to bad bacteria in the gut from Andrei. We all understand your frustration and this conflict of advice from the medical profession is not the best help. I am off to research more about the bacteria (if I can spell the full terminology ( good luck and let’s hope there is an answer somewhere. Will certainly mention it to my Hep when I see him next. Take care and don’t let the buggers drive you down
You are not alone in you frustration. I feel the same way and I'm sure many others do as well. Continue on your path to taking care of yourself the best you can.
I have a question for you. How are your Vit. D levels? I finally got mine to normal (had a severe deficiency) and my liver enzymes are back to normal, NO URSO.
Yes. In the beginning my D was very low. I don't remember exactly what it was. But, I took 10,000IU a day for a month and now take 5,000IU daily. I have it checked every 3 months.
I totally get the weight thing. I'm really ashamed that I let myself go. Now with PBC I am recommitted to losing this weight. Its not easy especially with the fatigue. Try walking to begin with. That's what I'm doing.
I will definitely try walking again. I have to start out very slow. I walked around the oncology clinic parking lot while my husband was having chemo a few weeks ago. I overdid it...
Hopefully once the D level gets up I’ll be able to do more. And isn’t vitamin D supposed to help with joint pain? I’m 58 years old and cannot go up or down stairs without hanging onto the rails. I’ve been on Urso since December (?) 2012. The joint pain, fatigue and hair loss has been bad since the beginning of the year. I’m wondering if low vitamin D could have caused all of that this year. I guess I’ll find out in 3 months with repeat labs.
Yes, take it slow. URSO can cause some of the things you are experiencing too. Google URSO side effects. But hopefully it will get better.
I hope your husband is doing better. When things pile up on us, they sure pile up don't they? Many of us are dealing with more than just our PBC. The women and men on here are getting it done💪. And those who are just hanging on❤, as you probably have seen.. there is so much support here for eachother💜💜.
Yes, things do have a way of piling up on us. I always try to remember that things could be worse. We’re more fortunate than some.
The support on here has been amazing. I don’t post much but I’m on here reading a lot. Especially late at night when I’m feeling lonely. That has helped me do much.
Wow. I have pbc and I’ve had some itch and fatigue off and on. The past year the fatigue has been terrible. I’ve also been losing my hair. Someone on here told me to consider having my vitamin D and B levels checked. The NP I see said she would check them. I found out Monday my Vitamin D was 8, which is VERY low. B was on the low end of normal. I started on high dose D3 yesterday, once a week for 3 months. My NP said it would stop the hair loss and help the fatigue. Now I’m hopeful that my liver numbers will improve. Thank you so much for posting. ❤️
Rant away, we are here and we will read the posts that come through, because we have all been there at some point in this uncertain journey. I don’t have words of wisdom but if you don’t feel happy with your treatment you need to find another doctor whom you can trust and feel comfortable with. I changed mine just because I didn’t like the former doctors bed side manner, far too abrupt for me I always came away feeling worse than I went in.
Big hugs across the Ocean, and I hope you are feeling supported and comforted by this wave of response. I am so sorry that you are having to go through all this. You are such an angel, a tonic and wonderful supporter of people, on this site, and you can definitely have all the rants and outpourings that you want and need and get our full support … we've all been there in different ways.
Have you read the large document about the official guidelines and protocol for the diagnosis of PBC? [NB: As laid down by leading UK and Euro PBC specialists, based on their experience, info-sharing and consultations]. It was mentioned and discussed on here about a year ago, and a summary version was published in 'Bear Facts', and the full report is on the 'PBC Foundation' website.
It may not be the exact diagnostic protocol that is followed in the US, but it is a sound and simple outline of what 'should' be done, by medics for the diagnosis of PBC. Maybe a detailed read of it will help you to compare and contrast what has - and has not - been done in your own case. Perhaps it will also give you some extra ammo, so as to get your Medics to do more, or retrace some steps. Also, I am sure there must be some similar protocol in the States, and if you can get a copy you can check if your medics are following local - official - 'best practice'.
Otherwise, please do take heart from all the support on here. Also, remember that to try to not give in to despair, stress or sadness. Treat yourself, spoil yourself, do things you like and love (the exercise and diet stuff sounds great, too! - NB I'm just off for a walk, then yoga, late (healthy) lunch and … shopping!
Remember stress, anger, etc. are all the worst things for autoimmune conditions, so try to coddle and comfort your self out of this slough - and get loved ones to do the same … as well as kicking ass with any recalcitrant Medics, once you have checked all the ins and outs of diagnosis and treatment that is on the 'PBC F' site. I hope this helps.
Woke up with nausea again this morning 🙁. Ugh! I'm searching for a hospital within my State that has a MR elastography machine. Hopefully figure out what's going on.
Hi Stella, I was also diagnosed in 2016 and have been following your posts since then. First of all thank you for all of the kind words and inspiration you give to so many through your posts. I understand your frustration. I was diagnosed at early stage PBC via a biopsy when I was 55 . Completely healthy previously and since then every organ / body system has something wrong and I keep collecting doctors..
My alk phos normalized prior to starting URSO so hard to figure out if I am actually a responder to URSO. In 2016 my fibroscan scoreswere very inconsistent but elevated and my hepatologist said he didn’t believe them b/c my biopsy showed stage 0-1 disease. I pushed for an MRE which showed stage 0-1 disease so I was happy . Now my LFTs are trending upward and I requested another MRE which showed stage 1-2 disease and focal areas of Stage 2-3 fibrosis😱. Again my doctor doesn’t believe it because my numbers are still normal.
I wish I agreed with him but I don’t. I think my disease is progressing . He is presenting my case at a Hepatology conference so hopefully I’ll get more info but expect to be starting Ocaliva.
I would push for an MRI with ekastography
(MRE) which is reportedly more reliable than fibroscan. He told me my insurance probably wouldn’t cover it but they did without a problem.
Sorry for the long post but to summarize I think an MRE might be indicated for you.
Also if your alk phos has not normalized after 2years on URSo why are they not discussing Ocaliva with you?
Thank you, You are right. They should be considering Ocaliva. My doctors are old school. I'm looking for a new place to go. And yes, one with an MRE machine.
I'm so sorry about what is happening to you. I was diagnosed as early PBC by biopsy but, I've never believed that. I knew I was further along because my medical records showed LFT's elavated way back in 2008.😕 Also, just what I've learned on this site too. Man, do I appreciate all the posts, and advice for sure!! ❤
I'm scared and now feel like I'm back where I was 2 years ago this month. Looking for answers and even doctors who know this disease. Thank you for sharing. All we can do is keep our chin upward and keep plugging away. Keep me posted how you are.
The current guidelines recommend Ocaliva if you have not responded to URSO after a year based upon a decrease in alk phosphatase. So I would strongly push your current doctor ( until you find a new one) to discuss this with you.
I just discussed this with my MD - I don’t meet the criteria b/c my alk phos is still normal . I asked him why that should matter if my liver now shows fibrosis ????? I believe my alk phos is normal only b/c I am on steroids for the last two years for arthritis and lung disease and have not been able to get off of them.
I really had to push him to discuss Ocaliva and he said he would discuss my situation with others and get back to me.. he also mentioned that many PBC patients are having good results with fibrates in slowing the progression . Fibrates have been around for a long time and have a good safety profile with minimal side effects ( and no increased itching that can occur with Ocaliva). Fibrates still being studied and would have to be given off label for PBC at this time and of course no long term studies.
Just some things to think about...
I will let you know when my MD gets back to me with his thoughts...
However, I do believe you should reach out soon and discuss Ocaliva and possibly fibrates.
Good morning and thank you for sharing your real self with us. I battle with the need to know, the desire to write the results of life, and then slip into my favorite mode of comfortable denial...Pink Floyd referred to it as being "Comfortably Numb". Anyway, the common thread I am hearing is that of fear and control. In my belief system, I do not get to know why and truly have know control over the results. After 21+ years of researching, worrying, spend many hours trying to outsmart all the professionals, I have come to peace with the fact that "it is what it is". Sure, knowing what is going on is vital. It gives me a sense of power over myself and health. I am not in anyway suggesting that any of us turn our backs on this and not be concerned. When I get all twisted up over lab results, or yet another health issue, I have to remember they are just that...tests, and they do not define who I am. I wonder if life before labs, scans, imagining, etc. yielded a more peaceful life. Breathing is all I have and according to the Zen folks, the only Dharma(truth). Be well
mostly, I want to just say to you and all the incredible folks here- it's such a blessing to be able to share the whole range of our emotions and experiences without shame and guilt etc.
I personally find some support groups not helpful because there is this expectation to always be a "warrior fighting the disease"
Ya know, we're human and sometimes we are frustrated, scared, angry ..
It's ALL part of human experience.
So glad you posted Stella. We all get it. And we care.
I feel so bad for us people who have cried out for help and have had everything under the sun done to us. My dr in 2011 knew, but didn't catch it, all he said was oh your mitochondria is off, thats probaly why u are tired. I know how u feel mad, angry, and sad that the drs can't help out more. I get that from my dr. Also about my glucose. Its been 6.4 my a1c . 6.5 u have to get on metformen. But no one has followed up with me and i will be making an appt to do it myself. Last time i went to for an office visit, to fill out paper wk. I told the dr in aug i had fell 4 times, his reply was, make another appt. I don't have the time on this visit. I haven'tbeen back since then. Sorry to dump this on u. I really don'tknow what to say about ur situation, so im no help. I don't trust the fibroscan i just had. My labs are good and it like the dr is so happy,why that doesnt mean anything. ..try to get in a good mind set. You sound like such a great person.
I've not read the other replies as I'm currently sitting in a room at the Mayo Clinic waiting for my own doctor to see me. I will read them later though.
I think highly of you. You are always so kind. I hate that you are being treated this way and I feel your pain. I had a very similar experience of my levels climbing and my doctor in Indiana who diagnosed me as very early, "pre-clinical " PBC/AIH overlap said "see you in 6 months"... it was unacceptable to me. I was confused and upset and angry by their lack of concern.
And in my case, not saying you will have similar findings, when I sought a second opinion at the Mayo Clinic my previous doctor was wrong in both diagnosis and staging. I actually have PBC/PSC overlap and I'm already in early cirrhosis. She started me on Prednisone I never needed without a bone scan. Didn't even do a scope to check for varices. Stuff I knew needed done from a quick internet search.
Early cirrhosis...we are talking the whole other end of the line .. we dropped everything and moved across the country for better medical care. It was scary to move but it would be scarier to stay. Seriously, we have noone here but each other. But, at least we still have each other.
I can't say what the answer is for you, but I would in the very least get another opinion. I'm not trying to scare you. I'm sure you are already scared. I am still scared. But... I am 100% sure that the best outcome for me happens here. Whatever life holds for me, I am confident that we made the right decision.
I don't feel like I have all the time in the world either. It's your body. You know how you feel better than anyone.
If I were you, well, when it *was* me... I got another opinion. It's your only body. Get the answers you need. ❤ Don't give up. Stay strong.
Yes, I had my appendix out in 2008/09. Medical records show my ALP was slightly elavated back then at 143. It was never brought to my attention by my doctors. My hepatologist believes I've had this disease for 10 years, maybe longer. 😪
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PBC and Autoimmune Hepatitis
