I had my fibroscan this afternoon. The first technician no doubt, hit me with the probe at least 40 times or more. Said machine was not wanting to read right. I thought oh great. After about 10 minutes she left the room and came back with another technician. This one appeared to be very knowledgeable in fibroscan. It only took her maybe 5 minutes and she had what she needed. And for the first time, I was given my score by her. Last year I was 10.8. It dropped to 9.5 this time. She said all scores had dropped. So apparently ocaliva is making progress with fibrosis. 😊
Fibroscan : I had my fibroscan this afternoon... - PBC Foundation
Fibroscan
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gwillistexas
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That’s great news!!
Yes I was dreading it. Never dreamed I would get my score today. Thank you😊
Woo hoo! I'm glad to hear that! 😃
❤❤❤😘😘😘WHAT EXCELLENT, EXCELLENT NEWS. 💃💃💃💃💃. I'm so happy for you 👏👏👏👏👏👏👏.
Stella❤
Thanks Stella. How are you doing?
Sorry this is so late in responding. I'm ok. I've been going non-stop. Pushing myself. This fast pace month is winding down now. My liver aches. Had to start water pills for edema in ankles and lower legs. I'm having labs in a week or so. Didn't post the ones I had on July 15th. They were good. Only ALP was up.. 158.
I'm so happy about your results!! ❤❤
Stella
I knew you had been busy with company. My ankle will swell if I sit too long at my desk too long without walking around, which I did today. 158 on ALP isn’t bad Stella. I know you’d like to see it lower. I remember when I was seeing my GI, he was very happy when mine came from 247 to 160. Said that was his goal. So hopefully yours will come down more. You take care of yourself. 🙏🏻
Gail 🦋
That’s great that your score dropped. Did you get you CAP score?
Mine is 332. I’m concerned for fatty liver
What’s a CAP score please?
• in reply to7443jec
7443jec - it measures how fatty is your liver. repeat testing tracks change in this. It is scored from 100 to 400.
She just said all scores had come down and told me the fibrosis had decreased. I will get the other scores once my hepatologist reads it. 😊
Hi what stage where you when you were diagnosed? can fibrosis decrease? great result on your fibroscan 
• in reply toSydgal
hello - fibrosis can actually decrease, yes. It is also possible that a lower kPa score is not representative of decreased fibrosis, sometimes it can be technician error, and sometimes due to how completely the liver has processed our previous meal. That's why we are asked to fast beforehand, to limit the chance of an inaccurate reading. But don't worry. A significant change in your score will give rise to an investigation into the cause by the specialist who ordered the test. And you can ask him what is the reason for the change if you keep track of your scores. The PBC App lets you register all your test results so you have them in the palm of your hand. I hope you are well?
gwillistexas• in reply to
I was asked to fast 3 hours before scan. At lunch I ate only applesauce, jello , banana and unsweet tea. So I doubt there was any fat in the way. Plus, I’m very thin. 😊
• in reply togwillistexas
gwillistexas - my fibroscan is tomorrow. That's good, now I know what I'll eat for lunch! It sounds like you prepared as best as anyone could. I have to keep sipping water. I can't go without for three hours. It causes me problems.
gwillistexas• in reply to
I chose to eat something easily digestible so my liver wouldn’t be trying to process as she did scan. My instructions said no water and no gum also. Try not drink water. There’s a reason they ask you not to. Hope all goes well and let us hear. 🙏🏻😊
• in reply togwillistexas
i'll have as little as possible anyway but my instructions say sips are ok! I have Sjogren's. My mouth and throat are chokingly dry at the moment. I'll have a longer time not eating though. It would be great to have it done early morning and take advantage of the overnight fast, but mine is late afternoon. Thank you for your good wishes and I will report back.
gwillistexas• in reply to
Oh, my aunt had Sjögrens so I understand. That’s rough. 🙏🏻
• in reply togwillistexas
Gail: thank you for asking me to report back. It was 4.5, the lowest it's been since diagnosis 8 yrs ago. But it has never been much above 5. Cap score is 221, so in reality, the fibroscan figures don't speak of much, if any change. I was asked to lie flat on back with right arm bent behind the head and down my back. I had thought the last f/scan had me lie on side with right arm extended across and up to 1.00 o clock position The technician said that if I was on my side the liver would slide away from her probe. She told me that the hospital would be getting some new equipment shortly which would be far more accurate than fibroscanning. I didn't ask for details, she'd obligingly seen me early, spent plenty of time with me, and was likely overbooked with patients.
I hadn't thought I'd any worries over the test, but I do feel relieved now, so I must have somehow been bothered. Keep up your excellent progress.
gwillistexas• in reply to
That’s great news! Thanks for sharing. Yes, I still want to hear my heps thoughts. I’ll let you know 😊
• in reply togwillistexas
yes - me too. The doctor will interpret these results in line with my overall situation and offer an intervention if needed. I'm hopeful it won't involve a biopsy. The haematologist considered that the low platelets issued from autoimmunity. I feel well, apart from fatigue, and have complete confidence in these doctors. Are your bones strong Gail? Does oca have any impact on them?
gwillistexas• in reply to
I had a bone density test couple weeks ago. I do have mild osteoporosis but my right and left femur had highest score. Being small frame increases risk and I’m assuming PBC hasn’t helped although my Vit d level is normal. I’m not sure if OCA has affected my bones. I don’t remember reading that being a possibility in the drug literature.
• in reply togwillistexas
Me too, mild OP. History of back problems and osteoarthritis in spine but neck of femur has the lowest scores. I'm challenging it with diet, supplements, exercise and weights rather than the drugs that are dangerous for some people. PBC increases risk of OP, and for me past chemorad. Were you offered bisphosphonates or suchlike?
gwillistexas• in reply to
No they’ve not mentioned a drug. I won’t take it. I’ll keep on with my Vit d and be careful with myself. I also have scoliosis nd have had for many years. I’m not crooked per say, but I don’t have the indentation in right side of waist. That has happened only in about the last 10 years. No bother to me. I’ll just keep on keeping on😀
• in reply togwillistexas
You may have better testing of Vitamin D, but here, it is possible to have a serum test of Vitamin D which isn't helpful, but cheaper than the test of activated Vitamin D. I didn't realise I needed vitamin K2 Mk 4 and 7 to steer into the bones the calcium absorbed by the vitamin D. Yikes! We have to be wizards to keep up with all of this.
gwillistexas• in reply to
Hmmm...what is MK 4 & 7?
• in reply togwillistexas
Vit K2 -mk 4 is from animal sources and mk 7 is from vegetable sources. I get 7 from supplement and 4 from milk, cheese, eggs, grass-fed beef. (No longer a vegan!) Though it all needs to be organic and reared on soil that is not deplete of goodness. A book by Kate Rheaume-Bleu "Vitamin K and the Calcium Paradox" was recommended to me. I strongly recommend to you. Also, Lara Pizzorno, MA., "Your Bones... How you can have strong bones for life - naturally." O my, my bones are tired, I have been awake for 18 hours plus now, so I wish you a very good night Gail.
gwillistexas• in reply to
Thanks for the info. 18 hours? Yes girl you need sleep. G’night 😴💤💤💤
Sydgal• in reply to
I was diagnosed in March this year, Liver Biopsy advised F3 stage 3 , 1st Fibroscan gave 5.4 and second fibrascan gave 5.6 stage 1 . So different in results so I don’t know what to believe!!
• in reply toSydgal
The different tests reveal different information on the subject of your liver's health. So don't worry that they are different. Perhaps you would like to message PBCRobert and ask him because he has as much understanding of these differences and what they can mean in general, as any specialist. Your own specialist can then tell you what they mean for you, uniquely. If you ask Robert first, you will be best informed to ask your particular questions when you see your specialist. Also, Robert understands your fears in a way that he just can put your mind at rest over this. Sorry if this is a bit of a muddly answer - it's a bit early for me!
Sydgal• in reply to
Hi Thankyou for your reply, the specialist wasn’t much help, he asked if I wanted another liver biopsy to confirm !!! I said NO as Biopsy is too invasive.. so definitely don’t want another one when one was done only few months ago!!!
• in reply toSydgal
It is difficult when the specialist doesn't know much about the condition. Some who don't know are keen to find out, others less so. Is it possible for you to find anther if the one you have doesn't have your confidence? It must be very difficult for a young mum to have to find the right doctor, but I would think everyone here would say it is important. Good for you turning down another biopsy! I still say speak to PBC Foundation. They have access to world-leading experts in PBC. If you message PBCRobert he can arrange skype with you.
Sydgal• in reply to
Yeah the specialist doesn't care much about the condition, not many doctors in Australia knows about PBC either , I think i will message Robert and ask him what he thinks of the difference in results.
Thank you so much for your advice , much appreciate it , my 3 year old has been diagnosed with Autism so it has been a tough year .
• in reply toSydgal
I am so sorry to hear this. I hope that you have some support living with this extra responsibility. There are some good PBC specialists in Australia. Karaliz on here works at a centre where it is well known. And there are other members on this site. Do you have contact with them? I'm going out now, but tomorrow I will have a look for them if they don't pop up. Over all, in all the world, there are PBCers who have children with autism. If you felt like it, why not post that, to be in touch with some of them? We know how this site helps us be in touch with others in similar circumstances. Every bit of shared experience with someone who understands is worth so much. x
Lonely_pbc...hello. I just now saw your post. and thank you. I was diagnosed 2 years ago. Fibroscan showed F2. I felt very confident with my technician on that scan. Last year fibroscan showed slight increase in fibrosis, F3. I told my dr I did not trust technician who did that one. He said could have been error or her part. So if her report was correct then fibrosis has decreased this time. If she was off on her scan and I’m now 9.5, which according to my fibroscan chart I am back to F2, so I’ll know more when I talk to or hear from my dr. I eat anything I want, as told to by my hepatologist. So the decrease was nothing to do with diet change. Hopefully I’m one of the ones that OCA is actually decreasing fibrosis.
Gail 🌞🦋
gwillistexas- that's great news Gail! Considering you have had such a tough year, it is even more wonderful to have improved.
gwillistexas• in reply to
Thank you. Yes, I was very concerned considering all the stress but apparently it didn’t get as out of control as I thought. 🦋
• in reply togwillistexas
You are an inspiration to us all with your determination, strength in adversity, and continued kindness in responding to every post with some piece of information. You are very good for us and it looks like you must have been looking after yourself too inspite of all the difficulties.
gwillistexas• in reply to
Thank you for your kind words. I found myself in a very dark place and I knew I had to pull out of it. I finally just had to give my struggles to God. I don’t discuss religion but he has been my source of strength. The great thing is, he has no hours and always there to listen.
I love to chat, so I respond to posts that I might can relate to. Some are things I know nothing about but I’m always reading and researching whatever the matter at hand. We are all blessed in many ways. We just have to stop, take a deep breath and look around.
Have a blessed day😊🙏🏻
• in reply togwillistexas
xxx
That’s good news. I had mine this week but the technician said she couldn’t give me the score. 🥴
I was totally surprised when she gave my score. I got the feeling just from her overall confidence that she may have been a highly trained technician. Hopefully you will get yours soon. 😊
That’s brilliant news on the score and an improvement with OCA. It’s good to hear some positives 👏 👏
Yes it was encouraging. I had already decided if my fibrosis had increased more from last year I was done with this medication. Now that we see it has actually shown to help, the next big discussion will be my weight. I received an update from Intercept last week. “If you have weight loss tell your dr”. I still believe it is because of OCA because it didn’t start until I started taking it. We shall see😊. Have a great day!
Great news going in the right direction
Absolutely. Took a little while but we’re getting there😊🦋
Oh wow! Awesome news!
Morning darlin'....boy, glad that's behind you for now. I know with everything you've been dealing with, this was a heavy load to carry. The unknown always freajlks me out. Good news that the score lowered with the medication. Wonder what the stats are for % of score lowering after a certain amount of time the meds
I sure hope this has now become one more thing you can give away to the Universe. Time to heal from your enormous amounts of stress. Remember, you are whole and complete, just as you are and very loved.
Flying back to AZ today from your beautiful state. Really love it here. I think we found our new place to call home.
Talk soon....be well....M
So pleased for you that things are moving in the right direction 🥰💕
Thank you!😀
Great news! Thanks for sharing.
Yes ma’am. Always happy to share something positive, especially with this drug. 😊
Hi gwillistexas:
More than happy that you had these very good results in your Fibroscan. Congrats! On the other hand, this result could be a breakthrough related to Ocaliva. Is It really Ocaliva capable to reverse fibrosis in PBC’ers. I pray to God this dream would come true, one day.
When you meet your hepatologist, please ask her/his opinion und keep us informed.
Enjoy life and have a healthy celebration 🎉🎉
Regards,
Rita
Thank you. I actually watched a video, I think from one of the PBC conferences a while back. The dr said the study had shown decrease in fibrosis for about 40% patients with pbc, and had shown to stabilize Cirrhosis in a certain %. I’m not due tobsee hep until January unless I need to see him sooner. I will definitely ask him. I know there are some who cannot tolerate OCA because of the itch. But thank goodness I’ve never been bothered. I take it like a vitamin and go about my business.
Could you send me the link of this video?
Thank you
Wish you had asked a week ago, lol! I cleaned out 150 saved emails on nothing but pbc. I’ll look in my archive and see if it’s there. 😊
I cannot find video but I found a link I saved. Would you like me to email to you?
Yes please, my email is ritarobaina@yahoo.com.
Many thanks
I just sent it. It is lengthy but you will see what I’m talking about. This particular link doesn’t give %’s 😊
So happy for you!!!! Was it in Dallas? Or Mayo?
Hi Pam. I had it here in Tyler.
Great news 👌🏻
The results are calculated there and then, I am told my results straight away. I don’t know why people have to wait 🤔
I have had to wait on my last two for results. I really think this technician was for some reason allowed to give the score. She seemed to have a little authority.
It depends on the practice procedures & protocols. It is available right away, but usually they want a doctor to read it & then share it.
I had one done last year & my hepatologist said I can discuss it with you today. So after the technician did it, he printed 2 copies & I waited for the doctor after he was finished with another patient to explain it to me.
Hello! Yes I was dreading results. Just knew my poor liver was wrecked from stress. But I guess someone was looking out for me. I’m not sure about stats. Yes Texas is a beautiful state. So happy you may have found your new place.
Again, thank you for being so kind and encouraging. It does a heart good. You have a great weekend and we’ll chat soon. 🥰
Good news,I'm due to have one on Monday before I see my consultant my last bloods came back all within range first time in years I was so happy I had tears of joy. It makes such a difference to get good results. Carry on with your progress
Thank you and good luck to you😊. Let us hear. 🙏🏻
Oh Gail that’s such heart-warming news! Keep doing whatever you’re doing! All best wishes.
Thank you😊
Very happy for you! Seems like the inflammation decreased which reverses the fibrosis.
Thank you😊
Great news.
Hi,
Happy to read your good news tonight. It’s been a rough year for you so I’m sure the scan result is a real uplift. Thanks for sharing!
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