Dragging my feet on starting ocaliva - PBC Foundation

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Dragging my feet on starting ocaliva

Ottley3
Ottley3

I was diagnosed in March 2017 (caught by a random blood test during my annual checkup, I’m 49). While i showed initial improvement on Urso, it’s plateau’ed. I feel great, my fibroscan said that my liver was in perfect shape (4.4), my biopsy showed some early damage to my bile ducts consistent with PBC. Because my blood test had plateau’ed, my hepatologist recommends that I start on Ocaliva. I was prepared to do it - have the pills and all, but am suddenly nervous about side effects of Ocaliva (i have none with Urso) and potential damage when I am in very early stages. My head says of course start taking it now before you become symptomatic but my gut somehow wonders if the risks outweigh the benefits when I feel the way i feel. My ALP ALT and AST as of today are 274, 89, and 52 respectively versus 305, 85, and 48 last month and 375, 209, and 139 at diagnosis. Would love any feedback - I’m almost definitely going to start the Ocaliva tomorrow but hesitating right now. I realize so many of you are facing far more serious issues and decisions right now and i feel bad asking but would love anyone’s thoughts. Thank you so much, i learn so much every time I come here.

26 Replies
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Ottley3...I am little over 2 months on Ocalvia. 1st lab showed Alk Phos down to 179 from 240. 2nd lab tomorrow. No side effects for me.

Ottley3
Ottley3 in reply to gwillistexas

Good luck tomorrow!

gwillistexas
gwillistexas in reply to Ottley3

Thank You!❤️

Ottley3...you doing ok w/Ocalvia?

Ottley3
Ottley3 in reply to gwillistexas

Yes so far so good! A little itchy but that could also be from the time of year. Thank you for the encouragement! How was your dr appt?

gwillistexas
gwillistexas in reply to Ottley3

Good to hear! I actually only had labs. I see Dr next month. Thanks for asking🦋

Hidden
Hidden

Why don't you take it for a few months & see how it goes in terms of blood work & any side effects you may or may not feel. Then have another discussion with your Hepatologist if needed.

Ottley3
Ottley3 in reply to Hidden

Will do! Thanks!

Hidden
Hidden

I understand how you feel. I didn't really want to go back on statins, given its side effects. But my Hepatologist was concerned about my cholesterol & told me it was perfectly safe to go back on it. I was hesitant & he was not pushy about it & suggested that I also discussed it with my Primary Doctor who is also a GI. My Primary doctor knew I was concerned & he suggested that I talk to a cardiologist. My cardiologist then called my Hepatologist to discuss it. They all agreed that I should go back on it. So I did. I am still working on eating better to lower the cholesterol more. Sometimes you just have to listen to the doctors.

gwillistexas
gwillistexas in reply to Hidden

You’re fortunate if you can control yours with diet & exercise. Mine is genetic & nothing brings it down except statins.

Hidden
Hidden in reply to gwillistexas

I am not able to get it down to the optimal levels via diet & exercise alone which is why they put me back on it. It is genetic for me as well. I still try to improve it more via diet & exercise in addition to meds.

gwillistexas
gwillistexas in reply to Hidden

😊👍

kandiepat
kandiepat in reply to Hidden

Hi nycgirl2012,. Do you mind saying what your cholesterol level is? Kandypat

Hidden
Hidden in reply to kandiepat

I am on a statin, 10mg every other day.

In June, numbers were good at 175 with all the components within range except LDL which was 1 point higher than range.

In Oct, it came in at 201, with all the numbers in range except LDL which was +29 over range. Ugh!!!

I think it was me, eating more cheese/diary to get more calcium as I did a bone density scan & my bd mass was declining vs 3 years ago.

So I am taking calcium supplements instead & decreasing the dairy.

Diet & exercise really makes a big difference. Before changing my lifestyle, I was on 20 mg of statin daily.

I suspect if I can bring my weight down another 5-10 lbs, this would also help.

Hidden
Hidden

Do you have aih as well? You need to take your meds and get past this my friend. It is what it is

Ottley3
Ottley3 in reply to Hidden

No just pbc thanks! It indeed is what it is. Enzymes are too high. Will take tomorrow

Hidden
Hidden in reply to Ottley3

I was asking because your alt is elivated too. Did he give you a asma blood test as well? It's also called smooth muscle

Ottley3
Ottley3 in reply to Hidden

Aha - yes, in fact was originally thought to have pbc/AIH overlap but the progression of the blood work and then the biopsy confirmed pbc only.

So helpful everyone - what i needed to hear and already knew! Starting tomorrow. Will report on my progress! Thank you

Hidden
Hidden in reply to Ottley3

My aih did not show up in my biopsy. My alt was elevated my AMA M2 was barely elevated my smooth muscle was so so elevated but my alt was elevated. My dr said that he was going to prescribe the prednisone anyway to lower it. It’s the same meds regardless I have it or not. I am very early diagnosed. Aih is easily treated when caught. Your alt is elevated my friend. I’m not a doctor. I’m just telling you

Ottley3
Ottley3 in reply to Hidden

Thanks Jenny for this - the overlap and AIH has been ruled out multiple times via blood test (the ANA? I forget) and the biopsy, but i hear you and i am definitely going to ask my doctor about it the next time I go to the doctor. Thanks!

Hidden
Hidden in reply to Ottley3

I’m Ana negative but smooth muscle positive

Hi my experiences 6 weeks into taking OCA as Urso non responder. Initial bad reaction with severe itching but within 10 days of taking bile agent itching improved and only side effect now is nausea. My ALP went from 550 to 310 in first 4 weeks and Bilirubin from 29 to 23 for me this is the lowest level in 3 years. My next bloods due in 4 weeks time. I am on 5mg a day. Annie

Gosh.. I would take it no questions asked. I cant take urso as it does not agree with me and my insurance co will not approve Ocaliva. You can send it to me if you are scared :) ( Just teasing).

I am out to find my own cure now, as I have no other choice :(

I wish you well!

Hidden
Hidden

Hello Ottley3.

I was originally informed that generally it's a year on urso before there's some gauge as to how one is going to be with the PBC and I know in my case my first LFTs and GGT done following diagnosis Dec 2010 on the urso was good. It continued for another 6 months and then started to slow down in dropping and then from around the 2yr mark on urso I simply go up a bit one blood check, then down a bit but I've remained pretty stable even if the bloods are not normal and may never be.

I did read a lot some time ago on this new Ocaliva but I'm dubious myself due to the fact that it can cause itching and after being on the urso almost 7yrs now, in my case over time the itching has subsided and currently it's pretty mild. I thought fluke notso long ago but it seems that it is staying that way at present and I've been like this for around 2mths now. Unlike previously where I didn't seem to have a pattern with the PBC I am finding I feel the same day in and day out with it. I do prickle later evening and I do find that when I go to bed a couple lower body areas do start to itch but it's not been in such a severity and I've been finding that my sleep pattern even if I do wake a few times in the night seems to be the same too.

You may feel good but those alp are very high.... mine is 101 on urso..... I would take it but that’s me

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