Feeling Discouraged : Well, I have always... - PBC Foundation

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Feeling Discouraged

gwillistexas
gwillistexas

Well, I have always been one of the first to brag about Ocaliva. Not so sure now. Alk Phos has gone up a little my last two labs. It is 161. Fibroscan one year ago was 9. Now 12. Hard to believe it increased that much in one year when all was going good. Hep wants a biopsy so he can confirm fibroscan result. I know fibroscans aren’t totally accurate and sometimes neither is the technician. He’s a very good hep so hopefully he will have another option on drugs. 😊

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Hi,

I haven't been on here to much. Sometimes I get to reading a lot on here and it causes a little anxiety, so, I've been lurking in the wings sort of. I guess "somedays" I just prefer to keep my head in the sand😔. Still, anytime someone mentions biopsy I feel I have to share this.

Last year in November I learned my fibrosis went up an "entire stage" from the previous year after having my annual MRE (Magnetic Resonance Elastography). I was thoroughly disappointed as well. I'm already starting to have anxiety for this years test in November. We all realize this is a progressive disease but initially we were calmed by being told that PBC progresses s l o w l y. Many women on this sight are living testimonials to that. Unfortunately not everyone falls into that catagory. I was told by my hepatologist that I've probably had PBC for a very long time unknowingly. So, maybe that's why I am progressing seemingly faster now.

So, being officially diagnosed in 2016 by labs and "a biopsy", these showed I was "early" stage one with zero fibrosis. (That's what my ultrasound and biopsy said.) In 2018 I learned (on here) that biopsies "are not" the gold standard for staging PBC anymore. They take a tiny sample, albeit many, from one general area of the liver and base the results on that. How could those findings possibly be accurate? The liver is so large. That's where fibroscans and MRE's come in. And the MRE is nearly 100% accurate. I believe it's 95%-97% accurate.

I realize there are other reasons for doing a biopsy. But make sure you're asking your doctor what those reasons are. Asking him/her about having an MRE. It's less invasive, and very accurate in measuring liver stiffness/scarring.

I'm glad you have confidence in your hep. And if he's good, he'll definitely know about MRE. With all this covid going on I wonder if research for PBC has waned a little.

Anyway, after my first MRE in November of 2018 I now had a reliable baseline. Turns out I wasn't early stage one as initially thought. I was late stage 2. And, where the biopsy showed zero fibrosis in 2017,.. in 2018 the MRE showed my fibrosis, which I did have, at a 3.14 Kpa. And like I said, in one year, 2019, that MRE now showed my fibrosis now at 3.84kpa. (*****I've been told, the MRE scoring table is NOT read the same as the Fibroscan scoring chart. So even though the readings are in Kpa's/kilo pascals,.....the scoring table is different.) I was told by my hepatologist that my fibrosis last November was now very late stage 3. So, I worry that I'm in stage 4 fibrosis now.

Anyway, I know I'm a hypocrite saying this, but, stress is a killer. Try not to stress too much. Just go one step at a time. And, please keep us posted. (I have a 10:00am zoom meeting right now. I gotta go.) But, please keep your chin up.... Here's a link. I hope it works. Just some info. about MRE's. Also, in talking to ones that are farther along in this disease, there is support and help at all stages. I know you know all this. You are always so encouraging to me and others❤. Again, please let me know how it goes.

(Google Mirtazapine and PBC) Interesting info. I'm not a candidate, but you may be.

Xxo

Stella

medlineplus.gov/lab-tests/e...

gwillistexas
gwillistexas in reply to Ktltel

G’morning. He says he wants to try and confirm fibrosis. I know they can only test a small sample. I’m thinking maybe he will want the sample from the area fibroscan shows most fibrosis. Heck I don’t know. We have no MRE’s here. As far as stress, the whole last year has been nothing but. My divorce wrecked me. So I’ll blame my stress on that. I’m not on here much either but I do read the posts daily. Take care of yourself and thank you for reaching out. ❤️

gwillistexas
gwillistexas in reply to Ktltel

Ktltel...he did tell me in the beginning that he would not do biopsy unless he saw a need. Maybe I’ll have the nurse call me tomorrow so I can talk to her and skip the messages.

Sydgal
Sydgal in reply to Ktltel

Hi Ktltel,

Is MRE same or similar to Fibroscan? I have never been offered an MRE therefore I have never heard of it.

I was diagnosed under a year ago... my Liver Biopsy gave Stage 3 however two Fibroscan gave scores of 5.4 and 5.8 ( apparently stage 1) .... consultant doesn’t have an answer to why liver biopsy and Fibroscan gives such different results.

Maybe i can ask the Doctor about this MRE.

gwillistexas
gwillistexas in reply to Sydgal

G’morning. They are similar but MRE is more accurate. And we all know biopsies aren’t accurate either and when I was first diagnosed my GI said he preferred fibroscan vs biopsy. He felt fibroscan gives more of an overall assessment than snipping a few pieces of the liver. My hep is doing it only to see if my fibrosis is as fibroscan said. I’m just ready to be done with it.

Ktltel
Ktltel in reply to Sydgal

Hi,

Ditto to what gwillistexas said. An MRE uses an MRI machine only with different software attached to it. We're talking really brilliant software that helps the reader see liver fibrosis/liver scarring very accurately. So, imagine being inside the MRI machine, only with these pad-like plates placed over the liver. Short bursts of vibrations are performed while you hold your breath. The whole procedure is non-invasive and takes anywhere from 18 to 25 min. The scoring/reading is a different scale than the Fibroscan table. Yet it still measures liver scarring in kilo pascals.

Nice to meet you🙋🏻‍♀

VeeWat
VeeWat in reply to Ktltel

So they do the MRI first for the abdomen then use MRE to zoom in on liver specifically?

Do you get injected with gadolinium?

Ktltel
Ktltel in reply to VeeWat

Hi, VeeWat,

For me, the appt. was for an MRE only. No dye injection. I went in, had to put on a gown, and the machine was already set up for the MRE...meaning, those pads connected to wires or whatever were there. They got me settled, put a pillow wedge under my knees, put headphones on me, put the pad with the connecting wires over my liver, and the technician said to me through the headohones to relax, and the machine itself is noisy, but you can hear the technician because she talks to you through the headphones. Anyway she says..."Breathe in..and hold.." and I did...like for 10 to 15 seconds. Then she says "Breathe out and relax and breath normally.". Then you go again..."Take a deep breath and hold.".....15 seconds approx. and again you exhale and relax before they go again. For me I did the whole breathing and holding my breath about 10 times. I can't remember exactly. But yea, you're in that tube like thing. My legs and feet were sticking out free, and my head and arms were sticking out as well. You're asked to rest your arms up over your head. Guess it sorta stretches out the torso leaving the liver right there to get a good reading. No pain or needles....

If you have issues with claustrophobia, let them know before hand. 👍🏻

VeeWat
VeeWat in reply to Ktltel

Thanks for this info because I don’t want the dye.

*hug*

Hang in there. I know it’s hard. I hope that you get the answers you need soon.

Thank you. 🦋

I am going for my shear wave elastography on the 11th. I was diagnosed by biopsy in 2017 at stage 3. I can definitely relate t3o the anxiety you ladies are feeling. It's taking me a lot of mental work not to go off the deep end thinking about it.

It's definitely disappointing that Ocaliva is not improving your liver. I was wondering if it's supposed to do anything other than just take the numbers down? One of the hepatologists I have seen told me that he wasn't impressed with the drug for that reason. It improves the ALP but nothing is ever said about it improving the liver.

Anyway, my ALP has been in the 300's for about 3 months so my new doctor says if no improvement by Nov. We will consider trying the Ocaliva.

Try not to listen to the stories you make up in your head! 😉 Stay strong sister!

-Pam

gwillistexas
gwillistexas in reply to 4pjx__

Thank you. The drug is still In final stage of clinical trials I think, as far as if it helps you live longer. Studies have actually shown great promise in that it can actually reduce fibrosis. Do I don’t know what the heck is going on. I wish I could have elastography. I just don’t trust fibroscan very well. I think some drs don’t want to go through paperwork to get Ocaliva. I had no other option but take it. When I was allergic to URSO capsules, my GI didn’t want to risk another form of the drug. My hep May choose another form. I don’t like being in limbo. And yes, I have all kinds of scenarios in my head🤣. Good luck with MRE and be sure let us know about it. 🦋

gwillistexas
gwillistexas in reply to 4pjx__

4pjx...the one thing I hang onto is I don’t feel bad anywhere, no pain, no itch and no fatigue. I feel normal.

4pjx__
4pjx__ in reply to gwillistexas

Well, for now, just go with how you feel. If you feel okay you are probably fine. Aside from losing your mind it's the only reasonable choice.

I will let you know about the elastography. Honestly, I don't hold much hope for a pleasant result. 😉

gwillistexas
gwillistexas in reply to 4pjx__

Thank you. Yes, please do. 😊

When I popped on my computer today, I was shocked to read your post. Oh honey, I'm so sorry you are having to go through this ****** . This, on top of everything else, is just too much. I would be feeling quite unraveled by now. Good thing you are a strong soul. I'm saddened to hear that the meds are not working for you and you have to face the realities of this disorder we all hope to avoid. I've been extra good at keeping my head in the sand. My Hep went onto an administrative position, so I've taken a break from trying to source another one. You are a good reminder for me to get going and find out what's currently going on with me. I know you'll do your homework on this and get the best care for you that you can in your area. I'll be sending loving thoughts and lots of healing angels your way.

Be well...M

Hi my friend. Yes, I’m a little overwhelmed to say the least. I’m assuming the drug isn’t working but I have not been told that. Oh you know I do my homework, no doubt🤣. I just talked yo the nurse. She said he’s hoping to get enough sample to confirm if the fibroscan is correct or not. So I’m moving forward with biopsy. You’re missed. I haven’t been too good at staying in touch. You have to rattle my cage sometimes, lol! All joking aside, I have a very good hep and am putting all my trust in him. I appreciate your kind encouragement words as always. Take care of yourself. 🥰🦋

I can certainly understand your disappointment and anxiety. I've just been diagnosed a few months ago, after years of complaints without a diagnosis and was then staged at stage 4 PBC (Fibroscan 21.3). I'm currently having month blood tests done to see if I'm an URSO responder.

When I voiced by anxiety about the advanced stage I'm at, my specialist explained that PBC staging and liver functioning are 2 different things, with liver functioning being the most important. And despite me being stage 4 PBC, my bilirubin and albumin levels are within normal range (my ALP and ALT are not), which to him indicates that my liver is still doing it's job well and that I shouldn't worry at this stage. My ALP has went from 498 down to 191 after about 5 weeks of URSO.

I wish you well.

Thank you. Yes there’s a difference in fibrosis stage and PBC. It’s a roller coaster at best. The only number out of range is my Alk Phos. I tend to get very anxious about things and considered waiting on biopsy but I would run myself crazy so I’m moving forward. I hope your numbers continue downward. Looks they’re doing well, thanks to URSO. Take care and I will keep you guys posted.

😊

What did your hep say about your increasing alk phos after the biopsy? What is causing it since you had it okay since taking ocavalia.

We discussed it before biopsy. He knows it can fluctuate and not always because of the liver. His main concern was the jump in the fibroscan score. I have an appt November 13th. I will have many questions.

He is only here on Friday each week and he got the report Friday morning. I’ve not had a chance to talk with him. His nurse sent my info to me that was released by him.

Okay...just curious. My alk phos is trending much higher vs 3 months ago. My hep is running more tests to figure it out.

Yes, mine started gradually going up the last 3 labs. Hopefully your dr can find answers. Please let me know what you find out. 😊

He is just running up more tests on the bloodwork; mention adding ocaliva to my meds if it is the pbc.

Keep us posted 😊

Will you know soon?

He told me he ordered more tests on Thursday. He didn’t say when the results are expected. But I trust he will get back to me as soon as he gets them & interprets. Like I did my labs Wed & he shared the results with me Thursday morning.

Ugh....

I also doubled up the lipitor dosage in Feb, not sure if that impacted the alk phos. In June my cholesterol numbers all trended down, but the alk phos went up.

Funny you mention the statin. I was on 40 mg simvastatin before PBC.I stayed off it for few months and cholesterol was going back up. So my Internist called my GI (before I saw hep). GI said ok to start 20 mg as long as LFT’s don’t rise. 20 mg wasn’t keeping cholesterol down so I asked for 40 mg. I’ve wondered if this could be the problem, or partly.

It could be the statins...I asked the hep & he said it is possible that meds can impact it.

Yes. When alp started upward, I mentioned it. He said but you have to also take care of the cardiovascular as well. So🤷‍♀️

I think our doctors need to assess the pros and cons of the meds & its overall impact on our health & decide the course of most benefit vs least risk. You & I can only trust in our doctors & let them take care of us since they are trained to do so. I am ready to become a vegetarian if that helps without meds.

I agree. If I became a vegetarian, I would literally blow away😂

My internist had actually ttsken me off simvastatin 20 mg and put me on Crestor 10 mg rather than increase simvastatin. I took it one months and was aching so I said no more. Crestor is a very powerful drug.

Well you should bring this up with your hep again & see what he thinks. Statins do have an impact on the liver. Some people are fine taking it & have normal lfts; others have slightly higher lfts. You have to have them figure that out for you & then decide on how to address it.

True. 😊. I’m about to get out and about. Beautiful day here. Later...😊

But your Alk Phos isn't too bad. I was told under 200 is OK for us. Was your doc worried about the result?

gwillistexas
gwillistexas in reply to Kakey

He’s more concerned with fibroscan score.

I’m sorry you are having to deal with this. The biopsy I had was a breeze and differed substantially from the fibroscan. I honestly don’t think we ever know what stage we are until our livers start failing. I take my medicine, follow the fatty liver diet which is healthy for the any distressed liver and pray. I don’t feel feel sick and labs are good now. I can’t dwell on all these tests results because biopsy, fibroscan and ultrasounds all day different things. Even the hepatologist speculates as the tests show different results. It’s most frustrating and frankly I cringe when it’s time for any of those tests other than bloodwork.

Thank you. I know they’re not totally accurate but yes it’s a worry especially when you feel good. I’m still waiting to be scheduled for biopsy but ready to be done with it. 😊

Hang in there. Praying for you! Keep me posted.

Yes ma’am I will. Thank you ☺️

One things always come to mind. Our sister mrspeffer said to me a long time ago when I was worried about something, maybe labs or something. “ it is already written”. So I think of. that and know whatever it is, already is.

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