Another soul destoying trip to the hep... - PBCers Organization

PBCers Organization
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Another soul destoying trip to the hepatologist.

4pjx__
4pjx__

My ALP was 300! 6 months ago it was 150. Billirubin was 1.7 it is always high. Doctor has ordered a dexascan and a fibroscan and labs again in 2 months.

I was diagnosed almost 3 years ago at stage 3 (severe fibrosis). I am really bummed. Any advice or encouragement would be welcome.

Pam

21 Replies
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Pam,

Hi, I haven't been on here for a while. First I'm sorry to hear about the numbers. How are you feeling? I mean besides the discouragement. I know how very discouraging climbing numbers can be. But, how are you feeling over all?

I went up an entire stage in one year. We all hope we progress S L O W L Y. So after I had my M. R. Elastography and I went from state 2 to stage 3 fibrosis in one year..I was soooo discouraged. I have labs at the end of this month. I'll find out if they too are climbing.

Has anyone talked to you about fenofibrates or bezafibrates? It maybe a reach but it has helped lower numbers. Not only those, but for some, they even have lowered fibrosis scores too. My dear hepatologist won't put me on them yet. 😡 He wants me to wait until my next labs and see. My numbers as of last draw were all normal except my Alk-phos. It was under 170. All that is good but, my fibrosis is getting worse.

Ask your doctor about fenofibrates or bezafibrates and see what he/she says.

Again, I'm sorry about the climbing numbers. I had such high Hope's for some new drugs by now.....not enough clinical trials I guess. The Seladelpar clinical trial halt was such a blow to many. I pray there are other drugs in the pipeline for us soon.

Thinking about you, please know you aren't alone.

Stella❤

4pjx__
4pjx__ in reply to Ktltel

Hi Stella!

I am sorry you are havimg so much trouble. I guess I was thinking you had stabilized at stage 2. What a piece of crap that is. How are you feeling though? Have you noticed a difference in your energy or health?

I did ask my doctor about the fenofibrates. He said I can try if I want (because I do have high cholesterol) but he didn't feel they were have all that good of results from it. So,next visit, if my numbers have not improved we will talk about Ocaliva and a fibroscan. Since the high ALP is coming from the liver or the bone, I ned to get a dexascan. So I guess that will be the next step. I actually feel pretty good. Although I did have some issues with my teeth. I had 2 dental implants that had infections. One was worse than the other and they had to clean it out and do another bone graft. So, I have been on a few rounds of antibiotics. My problem with my teeth is bone loss. I am a former smoker but I quit 21 years ago. It didn't seem to help my dental problem.

Thanks for thinking of me.

Pam

Ktltel
Ktltel in reply to 4pjx__

Hi,

Actually, I feel good. Only slight fatigue. But I have had weight gain with URSO. I also experience dry eyes and most recently dry mouth. But my pharmacy just switched buyers...and now my URSO pills look different in shape and feel. They were football-like in shape, white, smooth coated. My new pills are the shape of a large Tic'Tac breath mint. They are white as well but a bit lighter in weight and chalky to the feel. They make me dizzy-er, as I already had only slight dizziness. These make me "more" dizzy AND, I never had dry mouth and throat with my old Urso. I definitely have it now. It's annoying and affects my talking. Ugh!! I want my old pills back. Whatever fillers they're using in these.....I hate it. These new ones are made by Par Laboratories based in Italy. There are several distributors in the U.S. though.

Stella❤

4pjx__
4pjx__ in reply to Ktltel

Stella, next time you go for labs consider asking them to check your iron. Reason being: I had my Urso coming from a new lab last year and I was really having trouble with dizziness. I thought it was from the pills but I was anemic. Once I started taking extra iron the dizziness left. It may not be your trouble but just a thought.

Hugs,

Pam

Ktltel
Ktltel in reply to 4pjx__

Thank you. I will❤

PBCCarol
PBCCarolAdministrator in reply to Ktltel

Stella you are right that the halting of Seladelpar trial was a blow but even that would not have been approved for another year. There are more trials going on but it takes so much time for testing and approval. It also takes patients willing to be in the trials to move forward. I realize not everyone can do trials (I can’t) but everyone can join the PBC patient registry so our collective health history can help researchers look at a cause.

Hi,

I don’t have any advice but wanted you to know you aren’t alone on this journey. I was diagnosed almost 2 years ago, my alp raised from 223 to 289 in the past 6 months so I’m feeling frustrated too, got to wait another 6 months before they will consider an additional medication.

Sending a hug to you and I hope you feel better soon x

4pjx__
4pjx__ in reply to Rosemadder9

Thank you Rosemadder9, I do hope your numbers turn back in a better direction. It's pretty discouraging. The doc said we will talk about Ocaliva if it hasn't improved in 2 months. I am nervous about taking it though. I am worried about the itch. I don't have the itch exactly. I have had a few episodes along with a little rash. It seems to come and go.

Here's a hug to you.. I hope you get better

Pam

If it’s any consolation, I’ve had PBC for 21 years, and many times have had blips of ALP being over 500, only to drop back again and go years before another radar blip.

My Drs always told me I was a ‘non-responder’ due to my body’s lack of full compliance with the rules, and failure of the labs to fully get in line, but here I am, 21+ years later, after having a major bleed and many hundreds of blips along the way, still chugging along at a very advanced stage 4 with all kinds of complications (but still not sick enough for TX) but hey, I’m alive and kicking!

Try not to let these disruptions discourage you too much, they’ll happen (unfortunately) and then your body will settle down again. Sometimes our innards get angry, and it’s important in those times to be overly mindful of your livers ability to process things, but try not to worry too much. I wish you good labs next time 🙏🏻

Hi Janet!

Advanced stage 4? Are you just dragging yourself around? I feel like if I get sick enough for a transplant I will be dead....or the transplant will kill me.

I was hoping I would get lucky and stabilize at stage 3 but it doesn't look like that's in the cards. It is encouraging to hear that my levels can go down and stay there a while. Man, I do get tired of all the doctor visits and tests. It emotionally wears me out. I imagine you feel that too. It's maximum stress! Especially when it's not so good news. You must be very brave.

Thank you for the encouragement.

Hugs,

Pam

JanetH67
JanetH67 in reply to 4pjx__

Hi Pam, yep advanced (as in I went through the transplant evaluation last year but “wasn’t sick enough” yet. (i.e. had a major bleed, have major problems with portal hypertension and a massive spleen).

Yes, I do feel often like I’m just dragging myself around, but I still grab every opportunity I can (last week I took myself on a cruise), all by myself 🙌🏻. I try not to get discouraged that I may die of something else related to PBC symptoms, some days it’s hard. I’m not gonna lie, but I’m also not going to give in/give up, because, well, I just can’t. Thanks for your nice reply 😊

bassman45
bassman45 in reply to JanetH67

I'm in similar situation. Dx 1999 stg 3. Moved to stg 4 about 2006 with compensated cirrhosis. In 2018 moved to de-compensated cirrhosis - enlarged spleen, high portal pressure, varices, slight ascities. I too was told I'm not sick enough for a tx. I'm 74 so I reckon by the time I'm sick enough I'll be told I'm too old. Meanwhile I just enjoy each day - I feel good most days and great some. Kind of bummed though cause the CDC just suggested folks over 60 with health issues should avoid crowds because of coronavirus. Guess my late March Vegas trip won't happen. Charlie in NC (one of the few males with PBC)

JanetH67
JanetH67 in reply to bassman45

52 here Charlie, and the way I look at it, “something” is gonna take me down. I’d rather it was me, out having fun, than some technicality. That’s just my view 🤷🏻‍♀️

bassman45
bassman45 in reply to JanetH67

Our son is 50 and feels same as you. I did also in my early 50s. But at 74 I’m feeling wimpy. I fight it and don’t like it. Thought I’d give coronavirus a month and see where things are. Vegas in April...yea man!

4pjx__
4pjx__ in reply to JanetH67

JanetH67

I'm proud of you for get yourself out like that. Somehow (so far) I never feel too tired to have some fun and try to make sure to have a little fun every day.

Best wishes and hugs!

Pam

Bama_girl
Bama_girl in reply to JanetH67

I ❤️ your attitude and upbeat attitude and disposition! Such an inspiration to us all!!🤗🤗🤗

JanetH67
JanetH67 in reply to Bama_girl

Thank you! That’s so kind of you! I’m headin your way today. Family is driving from SWFLA to Vegas 😳🙄😊 Im bringing lots of music in headphones lol

Hi Janet

Try not to let each lab test panic you. I am 3 years post transplant and again on the PBC train. My ALP just jumped from 150 to 450 within 3 months. Started on the standard URSO but it does not agree with my other meds. Just taking it one lab at a time. Enjoying my life and just keep doing all the things I know is healthy for my liver.

Bama_girl
Bama_girl in reply to Allison57

👍🏼👍🏼👍🏼

JanetH67
JanetH67 in reply to Allison57

I think you mean to reply to OP/Pam 4pjx__

I used to let labs affect my mental state, until I realized far too many times the worst labs were when I felt my best?! I’ve gone far beyond letting labs affect my life as the bleed nearly killed me and my labs were perfect that day 🤷🏻‍♀️ There’s no rhyme or reason to much of PBC

I would sure find a way to take Urso. My docs and I believe Urso has extended my quality of life...I havn't missed a day taking it in 21 years. Although, maybe it's a different story with PBC post tx. Charlie in NC

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