LFT'S were going up instead of down. Weird nausea and URQP. I have elavated ferritin, as the lab that tested me has a range (30ng-130ng) and mine is 192. A few of you mentioned maybe AIH. MRE said 3.14 kpa. My GI, although kind and does any tests I ask for was honest enough to say "Stella, I think you need to touch base with your hepatologist and let's see what he thinks." So I did.
He'd literally just got back from a week long seminar on PSC and PBC. In many of my posts I called him "Old School" as 2 years ago he had me biopsied and found zero PBC. Even tho I was AMA positive and had an elavated ALP, he said I probably didn't have PBC because biopsy was petfectly clear. (Yea, I know... I had 2 out of 3 PBC markers) So, I didn't put much faith in his expertise. NOW, as he was staring at my MRE results and the color coded graph I made documenting the elavation of my ALT, AST, & ALP, not to mention the lower Albumin and elavated Bilirubin ALTHOUGH those two are still within normal limits, he had a different take.
Gonna be starting OCA. He's contacting my insurance Co. to make sure I'm covered. He was kind, informative and said he didn't believe my high ferritin skewed my MRE results. I'll take that! We stopped my Sulfasalazine 8 days ago. Labs came back. ALT, AST are back in normal range. But ALP still 173 with my bilirubin trending upwards, OCA is his recommendation.
Trying to wrap my head around having to start OCA. 😔❤
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Ktltel
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I am hearing that if your insurance isn't co operating the company that makes OCA (Intercept) is really good about working with people. Sending prayers for excellent results!
You should be very proud of yourself to do the work to make it easier for the Hepatologist to see the trends. I don’t know if they look at them as closely due to patient load. It is up to us to help us & them.
At least your LFT’s are back to normal. Hopefully, you are on the right track to get everything resolved.
Yep... It was color coded too. It was my labs for this entire year minus December. Was kinda depressing charting it out. Definitely could see the steady elavation. 🙁
Physicians love graph and charts, keep them coming. One way of getting through.
Sunny
Good to hear your a bit more positive, and your numbers are coming down again. Brilliant idea to keep a graph to get your point across. The hospital I go to in the uk have my Alp on a graph, that’s how she displays them to me to show a general downward trend.
I could see she had them on the screen for the consultation as records are kept on line now so i asked her to show me, she only brings up the ALP as that’s the only one that’s not normal. I am going to ask her if she has the others though.
Just putting up the link to some information on OCA, I think gwillistexs was referring to. Its from April 2018 after the OCA was approved for use, so it looks promising. Hope it helps and do remember we are all different in how we rereact to medications, you may get no side effects at all.
Ktltel...💜 I’m happy for you. Praying your biggest worries can be tucked aside now. You finally have the positivity of your dr in knowing he is fighting for you 100%😊. I’m wishing you the best results with OCA. I feel you will start to see a downward trend with your ALP within a short time. God is good🙏🏻🥰
Thank you❤. Interestingly, after my conversation with Dr. Olson, it seems to me that the only ones stating "dogmatically" that OCA slows fibrosis/progression is Intercept Pharmaceuticals. That sure doesn't inspire confidence in me about OCA because "they" make the drug. Infact, they're making millions off of those promising claims😒. But, he did say that one couldn't deny that it did bring LFT'S down. And it does! He also said because it hasn't really been proven yet to slow or stop progression, that more time was needed in order to really see the long term benefits of the drug. It was sort of a downer to me because OCA has some pretty irritating side effects. But, it seems everyone who takes it is starting to realize that even though it does indeed bring the numbers down, seemingly for now, progression of PBC continues. BUT, everyone is different he said. At the dose of 10mg for a prolonged period, there exists no data yet. But the promising part about this drug which pushed the makers to expedit it to the public faster was the fact that it DID bring LFT'S down fairly fast. Especially ALP. And that was apparently something that mattered enough to push it through. So.... here we are. You don't have this "itch" with OCA? ***Something I've got to share with Dr. Olson (below) Thank you candy12 & Gwillistexas I believe that's it!
Ktltel...I don’t totally agree that most continue progression. They did present evidence (I’ll have to see if I can find it), it actually reversed fibrosis is some patients & kept others stable. You might sign up for newsletters from Intercept Pharmaceuticals. I try to keep up with updates. And yes, it was a fast track drug. People in European countries were dying because couldn’t take Urso. I think that prompted the development. No, I’ve never itched.
Thanks Gail. I would love to see that again. Something else I can share with him. I'm repeating what he told me. I can always count on real PBC sufferers to set the record straight❤.
Wasn’t really trying to set anything straight. I just remembered seeing it. I’ll have to rummage through my saved emails. I’ll try tonight but may not get to it. Working all week sick has been hell so I’ll probably go to bed early. But I’ll find it 😊
No worries, why don't these doctors keep up with these positive findings? I saw something similar in that video you sent me. That they thought OCA slowed fibrosis. My hep didn't say anything about it.. he didn't even allude to it. But, new things are coming in everyday I bet. You poor thing. I forgot you caught a bug.... Don't worry about this. I'll find it. Hope you feel better soon.
I’ve been looking for it. I remember it was video & the report was OCA had proven to decrease fibrosis in some & stabilize in others. You’re probably right that it was in one of the Roundtable discussions. I’m glad you think you remember it😊. I don’t know if Robert found out more positive information when he attended the AASLD last week. I believe there were to be updates on OCA. Thank you. Let me know if you find it😊
So glad you got some answers and best of luck with OCA. I’m still waiting for my first follow-up appointment in late December to see if I am responding to URSO. It’s so nerve-racking not knowing, but I have been tracking my previous labs just as you have (even before I knew I had PBC)and love the idea of the graph! Hope I have some good numbers to add😉💕
Hi, I'm glad you are feeling more positive and that you have more confidence with your consultant.
However, and I say this with the best intentions, and don't wish to sound harsh ( writing posts so difficult to convey the tone), but having read your posts over the last few months, I feel you are being way too over tested. Your ALP is still within the range considered to be responding to urso, you will see ups and downs and this will be warped by such frequent testing. Also ALP is not liver specific, its found in bones - you recently posted you had fractured your leg. Therefore an elevation could easily be explained by that, its tends to take a while to go down. I'd be surprised if an insurance company would cover OCA without elevations which demonstrate true non response to UDCA. Although being in the UK I don't know how insurance works, but I know here it wouldn't meet the required criteria. The new EASL guidelines which Robert shared state having urso for 12 months with ALP under 200 is considered a responder, and as such your life expectancy and risk of other associated problems is normal. Which is fantastic news for you.
You have also said that removing one of your other meds seemed to reduce other elevated enzymes. Drs would not consider other tests worrisome whilst still within normal range, even if the " trend" seems to be going in the wrong direction. Bloods can vary from hour to hour, can be affected by your state of hydration, and by medications and illnesses like a cold etc.
You have been having more frequent blood tests than I have, and I have full on cirrhosis, portal hypertension, my last ALP was over 1000, my platelets are 55, ( lower end of normal is 150 ) albumin is 28 ( under 30 is where you start to see ascites), my billirubin is 55 (I think normal is under 12). Anyway, all my liver enzymes are deranged, and my consultant was doing my bloods every 6 months. I'm now having them done 3 monthly. I'm only telling you this as Drs who see very sick people don't fret until the numbers are really high, people get billirubin up in the high hundreds.
My impression is you are very anxious, and I think the Dr's haven't helped with all these tests rather than saying, all is OK, you don't need to worry, you have responded to urso as your ALP has remained under 200. Let's test you again in 6 months and continue to review it.
I understand you have other problems which may be why you have had so many CT scans ( my consultant wouldn't do a ct scan as I'd had one in the previous 12 months, so instead chose to do an MRI) as he was worried about the high levels of radiation in CT scans. Although maybe I shouldn't mention that as that might worry you unduly.
A number of years ago when I was very overweight - obese I should say, my Dr said the best thing I can do for my liver is lose weight, i subsequently lost over 8 stones. It did help with depression and my ability to move around more, unfortunately my bloods have continued to rise.
The PBC foundation recommend eating healthily, moving around as much as our health allows ( understandably affected by other conditions/ fatigue). I found with terrible levels of fatigue that I became depressed and felt my life was ruined ( I was 35 when diagnosed, but had symptoms from age 29). The PBC foundation have helped me so much in realising you have to live your life the best you can, and not let PBC be the focus. I think that is very good advice. I realise this takes time, and coming to terms with this condition is not an overnight thing. However I really hope you are able to find your peace with this, and your Drs don't put you through unnecessary tests, but offers reassurance and support.
As I said this is not meant in criticism of you, more the healthcare you've been given, and lack of reassurances. I really hope you feel well, and continue to make good progress.
Thank you for your response, and you dont have to worry with me about anything you have to share or how you say it❤. I welcome thoughts and advice. I AM a huge worrier. I almost have PTSD when it comes to thinking about yet another surgery. And in the beginning of this PBC journey that's all my GI focused on. I think she was trying to reassure me since transplantation was the conclusion of the matter, PBC isn't a death sentence. All along it was the possibility of having to have another surgery that was freaking me out. So I went waaay overboard trying to find out my stage and a way to slow progression or better yet get to a root cause and fix that. Right now my labs are checked every 3 months. That's what my hepatologist has laid out. I've had some weird episodes lately with nausea and pain and even bowel issues which I didnt mention 😖. And before my PA will prescribe anything, at my hepatologists direction, she runs labs. Good thing, as I would never have caught this recent spike. Plus, I was feeling lousy too. It seems they're attributing it to my Sulfasalazine, RA meds. So after being off those for 10 days they did run labs again. My GI and her PA say they're learning about PBC through me, their own research and 2 other women they also see. There have been other friends on here reminding me to relax... telling me to take a deep breath and get on with living life. I really do try. I have though, been determined to know what stage I'm in. And over the past 2 years until just last week, I finally got an MRE. Up until then, every raised ALP, raised ANYTHING.. had me stressing out and I guess I did express those anxieties over and over on this forum no doubt to the rolling eyes of those of you who are experiencing the worst of this disease or at least those who are far worse. Please forgive me❤❤. I may have re-posted everything again from labs results to who knows what lol. But I will say, now that I believe that I have some idea where I'm at in this disease, and my hepatologist has truly calmed some fears I've had, I'm hoping I can just move on.... live, as many have advised me🌹. I only see my hepatologist once a year. I missed last year and he and my GI consulted about what he wanted done with me as he is faxed all my labs and tests. So he's still very much in the mix. Starting OCA will require labs every 2 weeks for 6 weeks my hepatologist said. I don't know if that's excessive or not. It's just what he's doing with me. Should I be questioning him about that cause I really don't know what the routine is starting this new drug. And I'm in agreement with you about whether I should even be starting OCA. Some of you have PM'd me about that. I've somewhat left myself in my hepatologist's hands about that. He looked over my labs for this past year, my recent ultrasound and finally my MRE and he decided OCA was worth a try. I truly value everyone's thoughts and input though. And especially those of you who have walked this road already. When ones share what they are experiencing with their own PBC, and most especially ones further along with this disease, .... it grounds me. It gives me perspective. I continue to learn. Thank you Wass71, sincerely. You've given me food for thought.
Hi Stella, thank you for taking my post as it was intended.
I don't consider your concerns or worries to be any less valid than mine because I'm at a more advanced stage, and certainly wouldn't roll my eyes, I hope nobody here would. Your concerns are real, just possible affected by your anxiety and PTSD, so as they are slightly out of whack with the level of your illness.
I don't think anyone can tell you the cause of our illness, as they currently don't have a definitive reason why some get it. Probably best to just think that as a woman you are more susceptible to auto immune illness, and as you have RA, you obviously have some propensity to them. Unlikely to be anything you've done, just bad luck.
One thing you said did interest me and also make me think its another way you could have been reassured - you said your biopsy showed no histological features of Pbc. This could be wonderful news for you. I was involved in a study in Newcastle ( north england), a study under David Jones ( Pbc foundation/ easl ) expert on Pbc ( Robert referred to him as one of the 3 top Dr's in the world specialising in Pbc). When I had my initial meeting with the study Dr, she said the way Pbc works is, on a micro level the cells get damaged and once this damage starts the cells adjacent begin to become inflamed, this causes a domino effect. She said the thinking is with early diagnosis, and the use of urso they can stop this before it starts, thus although you have Pbc, the liver never becomes damaged. So if that is the case its possible they have caught your Pbc at a super early stage and you'll never progress to have a poorly liver. That an the recently published easl guidelines which has been developed by examining research and experts, determining the likely outcome if ALP is maintained under 200 being so positive.
As I said, I'm aware I've had many years to come to terms with this illness, so I recognise it will take you time. But please take solace in the relative normality of your biochemistry, and the very likely case that you'll never need to worry about surgery.
Just on the frequency of testing, of course its up to your healthcare team to decide what is appropriate, but it never hurts to ask, do I need that test? What will it tell you? How will it inform/ change my treatment. Also how anxious will it make you if the numbers go up, will you be able to discuss the relevance of that change quickly or wait days or weeks worrying unduly?
I'm wishing you good health ( physical and mental), and hope you feel more positive going forward.
Ktltel...I was monitored monthly for 4 months then every 3 months, and still have hepatic every 3 months. CMP every 6. Trust your dr on his frequent labs. He is aware of what Intercept has asked of all prescribing physicians. 😊
It does sound like huge steps forward, compared to where you have been recently, so I do hope you are feeling calmer, more reassured and listened to, now. [tho' does seem remiss of your doc to ignore the 2 PBC diagnostic criteria.]
Lots of people on here have said about how much Oca has helped them, so I have fingers and toes crossed for you that it works, and you are soon back to your wonderful, lovely self.
And remember … spoil yourself, have fun, try to avoid the stress and treat your self.
Im wondering if you can share this article please Pamela ? I've been taking OCA for 5 years and although it has slowed down disease progression I have wide spread cirrhosis that nothing can reverse ... must refer to very early PBC with zero or minimal damage.
I think we may be talking about 2 different things? I was referring to Pamela'a post "I just read an article from Canada I believe where their research shows oca May even reverse pbc....." which i'd not heard of before.
In response to your question, my consultant firmly believes that my liver would have failed had I not commenced OCA as part of the long term part of the trial. I already had cirrhosis when I commenced, my ALP and GGT were skyrocketing, my Albumin was low and I felt appalling - I'm a nurse and my husband was scraping me up off the ground after work some days!!
So yes in spite of widespread cirrhosis, OCA has certainly slowed down my disease.
Karaliz...Please accept my apology. I was just wondering. I’m still not very comfortable with OCA. Yes and I remember you being in the trial & how much it has helped you. I think of you many times & how blessed you have been with results. Thank you😊
Gail there's no need for an apology at all - your responses and posts are always so considered and thoughtful. The wild card is we are unique individuals ....perhaps another person with my level of disease may not have responded as positively. The trial is finishing actually and as OCA is not available in Australia, my Dr is applying for it for me on compassionate grounds.
Does your concern stem from the those who took far more than the recommended dose and had negative outcomes?
Karaliz...thank you. No, my concern is OCA was my only option when I couldn’t take Urso. And fibroscan showed (for whatever it’s worth), my fibrosis went from early stage 2 with mild fibrosis one year ago, to stage 3 fibrosis now. So yes, I’m afraid it isn’t slowing it down. I’m no longer alarmed about dosing, as I am on 5 mg once daily. I had just started OCA when first warning came out so yep, I was slightly frantic. 😀. But I got past it. And I understand it’s a struggle for all of us in some way. Please always know, we love to hear from you & how you are doing. You’re a strong lady. And thanks for always being so kind 🙏🏻🌹
Gail I understand your concern and I appreciate your anxiety around whether OCA is working as it should for you. I have had multiple fibroscans and to be honest have found them not the most accurate of tests - it seems to me to be rather a blunt instrument. For what it is worth, my Dr ( senior consultant on the transplant team) is more interested in blood tests and how I actually feel. Because I have cirrhosis, ultrasounds and MRI clearly show this state ( that's a funky looking liver is the general consensus!!) but i agree that the progression of fibrosis is much more difficult to determine.
Karaliz...my exact thoughts on fibroscan. I’m praying that when I’m finally seeing my new Dr, he will suggest an MRE. My city doesn’t have that technology just yet. But where he’s coming from (couple hours away), they have 3 according to Resoundant when I search locations. Oh yes, Its all good. I just need to see new Dr & hopefully he can ease some of my concerns.
I take OCA 10 mgs in the morning and Urso 1gm in the evening. Although I'm classed as a non responder to Urso, my Dr wants me to continue taking it just in case it helps even a little.
I have never experienced the itch. I was diagnosed 15 years ago at 38 and have been lucky enough not to experience the disease related itch or medication related itch.
Hi Ktltel. I recently read about a woman who had advanced liver cirrhosis, varices, etc ,.and was waiting for transplant (in America), she was writting about her experience in another forum. She said,... "and guess what, for years my LFT are usually normal".
I have heard this a number of times that LFT's are not always a good indication of how the liver is performing. Was wondering if anyone else has experience of this?
Yes! I've heard this time and time again. That's why I felt I really needed the MRE. Liver enzymes do tell a bit of the story though. Out of the 3 criteria for diagnosing PBC, raised ALP is one of them. As we live with the disease though, over time, its a "combination" of tests and scans etc., that keeps us aware of how we're really doing.
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Finally, some good news!!
Has anybody's blood tests become worse after starting on Ursofalk?
AMAs in blood no other tests show it
MRI looks good... am I in the clear?
