Last year my fibroscan result showed my fibrosis to be early stage. Now it is early stage 3 fibrosis. I m disappointed to say the least. Dr is not worried at this point. He said fibroscan results can fluctuate & it might be lower with next scan. He told me to not get depressed about this, especially for the fact that my bilirubin is good, platelets are in high normal range, urine is clear to slight yellow, no fatigue & no itch. So I go from here. But I do wish I could have stayed on Urso. My personal feeling is OCA has not slowed progression.
OCALIVA /Fibroscan Results: Last year my... - PBC Foundation
OCALIVA /Fibroscan Results
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gwillistexas
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Hi there
That's interesting, what was your fibroscan score before and then later. I'm on a trial at mo and my fibroscan not got any better after 2 years which is disappointing because you expect maybe a more normal score.
Last year 8.4. Now 10.6. Yes, I don’t even want to take OCA anymore. But until he finds something better/different, I’ll continue. I’m not one to just stop a medication. That would be foolish. I’m off to work. I’ll be home this evening. 😊
*hugs*
I am sorry that your test results were not what you had hoped for but I'm glad that your doctor is still optimistic. One important thing that I think we can take away from this is that there are many factors that can indicate disease progression. I also take comfort in my own signs like that. Even on days when I'm exhausted, itchy and feeling awful I say to myself "my eyes are nearly white... I used to look like a minion so things are looking up. 😊"
My fibroscan was completely normal and they tell me I'm in early cirrhosis. I questioned that and they said the cirrhosis is indicated by my enlarged spleen and the MRI. So who knows... I am sorry though. I agree with you doctor, it does sound like you have many positive signs going for you. 😊
Thank you🦋
My GI is very good & highly educated with pbc. But he did tell me, there are now Hepatologists making monthly trips to my city. So if I find myself getting in the dumps over this, to let him know & he will set me up with one. He feels a might calm down if I could talk with one of them. They come from 3 major hospitals in Dallas. Gotta head to work. Later...
I think you should see one of the liver doctors. My experience has been night and day with gastrro doc and heptologist...
tonia17...I researched the 2 hepatologists whose names I was given. Both from Liver Institute in Dallas. I may be leaning toward the lady dr. Her name is Maisha Barnes. She is also active in liver research. She completed her fellowship in gastro & transplant Hepatology at University of Minnesota. I have to look past the fact that she’s transplant hepatologist. The reason my dr sent her name is because she & the male dr are the only 2 who come to Tyler on regular basis. My dr told me a while back, the very few hepatologists we have in Tyler are not good choices & for that reason, he chooses Dallas helps 👍
I believe the majority of hepatologists are trained in transplant hepatology.
I know. They have to be. Was just stating where😊
I didn’t understand your comment about looking past the fact that she is transplant hepatology. 😊
Because I’m not thinking transplant & neither is my GI. Like I said, it just happens that the 2 who come to Tyler are transplant heps. He called my increase in fibroscan score a small “bump”, nothing that alarmed him. He said he cannot say the OCA isn’t working. Only biopsy will tell for sure. My husband went with me this time. He told Michael I am very proactive & have done good research. I’m actually relieved that I can see hep. I have been on 5 mg OCA for a year. My understanding from Robert is after it is seen to be well tolerated, 10 mg would be optimum dose. That hasn’t happened
Well, actually not all are.
Fibroscan scores can fluctuate a bit your score is same as mine. I take trial drug and uso which I think will always be the case. Just thinking why you not taking uso aswell.
kimphoebe...I had a bad allergic reaction to Urso within 10 days of taking it.
I think it would be worth the risk to take the brand name (if they still make it). Your reaction might have been to one of the fillers or dyes they use in the generic...
I would just stay close to hospital if your reaction last time was severe...in rx wirld “severe reaction” is throat closing up..
tonia17...I think I took ursodiol by LAN?
kimphoebe...the fibroscan score chart I have, shows up to 11 to still be in stage 2, high end. Not sure how my dr got early 3.
The chart i have looked at anything over 9.5 is severe fibrosis. So would be F3 or stage 3
kimphoebe...I have 2 different charts. The bright colorful one, shows score for hep b, hcv-hiv, hep c, chronic cholesterol diseases, alcohol & nafld. All have different ranges for score.
kimphoebe...”cholestatic “, not cholesterol 😊autocorrect
The one I looked at is with just 4 livers at different stages. 👍
Just a quick question what's your bilirubin at mo if you don't mind saying.
Total & direct .30 each
Thankyou
Not really sure bilirubin is read different from the USA and the uk mine is 11.
I’m not sure what your lab ranges are. Both of mine are normal
Bummer...sorry to hear that. I think IAmTheGlue has a good point. Your doctor is opimistic and I would be encouraged by that. I would think that how you are feeling would be another good indicator. Are you feeling good? I think you'd be noticing a difference in the way you feel lately if you had slipped that far. Have they ever done a biopsy? A fibroscan may not be a accurate as some people think...personally, I have heard both ways. Some say more accurate some say less. Anyway, I say keep breathing and go out and have some fun every single day!
Pam
Pam , I feel very good & he agreed that is good. When I first saw him, he said he preferred fibroscan vs biopsy. I sent his NP a msg today about maybe OCA isn’t doing what we hoped. She said that cannot be decided strictly through fibroscan results. Biopsy would tell if med has worked. So I have decisions to make. Thank you for replying. 😊
I would agree with your doctor fibroscan results fluctuate my hep is not doing one on me for another 3 years thats good enough for me i think gettiing these scans too often stress us all i just go with how i feel and hope for the best
Have you had an ultrasound recently
Hi Ballymahon. I haven’t had an ultrasound since diagnosis a year ago & my Internist said it was perfect. I would like to have another. 🦋
Thats good it might be a good idea to see a hepatologist to review your medication and look at your scans etc
Sorry to hear that gwillistexas. Hope you are keeping well otherwise. If I remember right you had a reaction to urso? Is it possible to try a different brand? Sorry don’t know a lot about the differences but I know when I got a different one I reacted differently and I now have to make sure that I’m on the same one.
Hopefully it’s a fluctuation and will be lower next time.
Best wishes
Angel_b...I took Urso capsules & I think I’ve read here that others had problems because of fillers. Besides fibroscan fluctuating, he said also can depend on the technician. That’s great😀. But yes, I feel great.
Sounds like your doctor is positive so it probably is not something you need to fret about. At least now you have access to a hepatologist anytime you want without having to travel to Dallas.
Keep smiling!
Yes ma’am. Thank you. I have no insurance at present but I’m getting started saving for consultation. 😊
Your GI seems to be on top of it. Not to worry!
Thank you. I sure hope so🤗
What bothers me in one way is he told me a while back he would refer me to hep if I ever got cirrhotic. My scan doesn’t indicate that but he knows I’m a handful when I worry😃. So I respect him feeling that I might be more comfortable with a hep, or possibly that a hep can get a grip on my concerns. It’s true.
You are fine! You can go with your gut! Meaning do whatever makes you comfortable.
My dr forwarded 2 names & I just researched. One is a lady from the Liver Institute in Dallas. 👍
Can you not pick up insurance on the exchange? I know Texas is so bad about ACA coverage...in all honesty I’d consider moving to another state if it meant having coverage...it actually may be something I have to consider if I can’t find a job that offers health care AND ACA gets stripped from Trump...😢
Hey, I understand your frustration. It is great you have no itching and fatigue. I tried Ocaliva, and my numbers shot through the roof. We realize the problem was, or at least we think that I was supposed to continue taking my urso, and I guess there was a misunderstanding and I didn’t realize that. I had severe itching either from the elevated levels for the Ocaliva. It was so bad that it was reported to the FDA is a case study. Unfortunately we will never know what caused it but now I don’t have the option of taking Ocaliva. i’m not sure if it would be worthwhile to ask but it may be an option to take your urso as well if you haven’t already explored that .
danaLL...I started with Urso but allergic. My ALP dropped pretty quickly. I was tested monthly for 4 months then every 3 months. CMP is every 6.
So sorry to hear that. Best of luck with everything!
I think it would be good to see a good hepatologist they specialise in the liver and tend to be very knowledgeable all hepatologists
Ballymahon...oh yes, that’s what I’m going to do. Mind made up. Looking back through the months with GI, I would ask about certain vitamin supplements & was told no real need, as I had read posts here & ALF FB that some were taking added supplements either with dr approval or dr told them too. My GI is a great Dr but I wish I had been with a hep from the beginning. But until recently, we had no good ones here. Now that I’ve found out about the 2 who come monthly, that’s what I will do. I know my health will be in better hands😊
Hi gwillistexas,
What were you ALP, AST and ALT if you don’t mind me asking during the time that your fibroscan score changed? Were they in the normal range or elevated? I am a non responder to Urso and my liver scores remain outside normal at around the 250, 70, 65 mark respectively. My Dr. Suggested Olcalvia but I haven’t started yet.
Thanks, and I hope you get the Dr you want.
Alison
I don’t mind at all. The only time my ALT & AST we’re elevated was at diagnosis. They came back to normal quickly when I started OCA & have stayed normal. I think ALP was 247 at diagnosis & it too dropped quickly. 247-170-160-132. Stayed at 132. In early July ALP was 139 & that was with CMP lab. I requested hepatic profile a week later to get direct bilirubin & ALP was down to 134.
gwillis, your bilirubin is great! If your albumin and prothrombin time are also in normal range then it's pretty safe to say that your liver is functioning well, and that's what matters.
As other recent posters have said, those 3 tests are the gold standard, whereas ALT, ALP etc are not true measures of function and so less useful. Try to get all 3 if you don't already have them, and that will help your specialist give a more definitive answer.
Yes, albumin is good. Not been able to find prothrombin time but platelets are 388
Platelets are also a very good indicator according to my Hep. Were you concerned that your medication hadn't slowed progression solely because of the Fibroscan? They can be unreliable beasts, and I speak from experience. Sounds like you're doing fine.
Skyping...yes my platelets are very good. I think my dr is concerned that the OCA didn’t slow progression according to fibroscan. His NP messaged me today that the reason he wants me to see a hep, is in hopes she will have insight on a different drug. Thing is, he never upped my dosage to 10 mg. Did you have fibroscan that wasn’t favorable?
I looked back as far as a year ago till now. Albumin has stayed 4.3-4.4. Halfway in normal range at my lab.
In transit but - I’m sorry to hear this. How do you feel? Did your doctor recommend increasing ocaliva dosage? I share your concerns and getting a second opinion. Hugs.more later
G’morning Ottley3...I am feeling very well. No, he didn’t recommend increase which leaves me wondering why. I’m disappointed in him to say the least. But that’s ok, I’ll start checking into the hep today & find out what their schedule is to come here. Appreciate you checking with me. Safe travels. 😊🙏🏻
Sorry to hear that you were disappointed. But glad to hear your positive attitude. Also, the fibroscan is not as accurate as we would like it to be. My Hepatologist said that it can be off by 20% and biopsy still the gold standard.
Ellyne...I do know fibroscan isn’t accurate but my GI chose it. I have seen that the MRE (elastography) is 99%accurate so I’d rather have that vs biopsy. But GI has made referral to hep & I should hear from her office early next week. It’s a lady & I pray she’s kind😊. So we’ll see what she says. Thank you so much🦋
It’s good to see the hepatologist for a consult. Current literature indicates that female doctors are more attentive to patients & they listen more than males. Hope your doctor fulfills those expectations.
Yes I’m actually relieved to see a hep. Her credentials are great. She is active in liver research among many other things. The big plus is she treats autoimmune liver disease. She’s probably in her 40’s. Very strong sat The Liver Institute, as all their heps are. I feel confident 🤗
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