I'm not posting on here as much as I used to be. I check in and read posts twice a week. ❤
So, my hep put me on OCA. I was on it for 2 months. My AlkP "went up." He said it should have brought it down or even normalized it. It didn't. I also experienced quite a bit more fatigue during that time. My bm's turned a very light clay color. So, he took me off. I've been off of OCA for 6 weeks. I had labs this past June 11th.
1st row is my beginning baseline numbers. Then the two months I was taking OCA. And then my latest labs after being ONLY on URSO and off OCA.
I also noticed after getting off OCA that I had more energy within a week of stopping it. My bm's returned to a normal color. And my AlkP has started to go down just a bit. My Albumin is the best I've ever seen it. 👍
I'm still struggling with fatigue. I've gained weight as I seem to run out of steam around noon😩. Unfortunately my appetite is normal. So, you do the math. Food + no exercise = weight gain. 😣 My doctor says to force myself to exercise. So I'm going to.
A few things were in the red.... One being my Neutrophil Abs Auto. It was 8060. Normal is 6825. He's gonna get back to me about whatever that's about. I'm afraid to Google it. Lol....
Other than that I have some weird edema. Especially in my ankles. But, All in all I can't complain. I can function and do most stuff. Mostly in the first part of the day. So...... there it is.
Hope everyone is hanging in there.❤❤
Stella
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Ktltel
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Hi Stella, I was diagnosed in 2011 with PBC/AIH. My ALP stays elevated from 170 - 190's. I've been on Ursodiol from the beginning. I also tried Octavia but didn't help, even with the higher dosage. I have fatigue, osteoarthritis, and other joint and muscle pain. Several other things including lymphedema that I was diagnosed with in 2018 while being treated for Chronic Venous Insufficiency. My doctors also recommend exercise, so I force myself to walk several times a week. It is difficult sometimes, but I know it helps with the high cholesterol and overall health. I try to stay positive and I have so many things to be thankful for. Hang in there and hope you are feeling better soon.
Hi Stella good to see you but sorry to read your post. Has your specialist tried you on Bezafibrate, there seems to be some chatter about this alternative. I have not been prescribed it but maybe someone on here will come along soon and add their knowledge and personal experience.
I know with edema that it is good to elevate the ankles above hip height when sitting. In the old days after a long period of time I used to lay on the bed in reverse and put my feet on the wall, great feeling.
As to the exercise start little and build up, I used to love dancing and every now and then I'll burst into a little routine for 5 minutes which like the song "takes my breath away".
Hi Stella, I’m like you in that Urso is not working for me so Drs are putting me on Bezafibrate so I will let everyone know how well it work or not as case may be.
Hi, still don’t know as I’m not seeing my specialist until 18th Dec. My itch has got worse just recently so I’m a little worried it’s not got any better. I do know that itching doesn’t mean things have got worse but I can’t help feeling a little apprehensive. Fingers crossed 😁
Wish I had your bloods, mine have been skewed for a while now, mine hovered between 170/180 for years
and I was considered to be responding to urso then.
But recently it’s up at 220/258 so just going to start the bezafibrate as a non responder.
I wonder at what level did you doctors consider you a non responder, was it because they never returned to normal. I thought as long as you're within 1.67x the Upper limit your doing okay.
Sorry OCA didn’t work for you, I decided not to take it at the moment my doctors have not had anyone respond favourably to it yet.
My experience only. Diagnosed over 15 years ago at age 38 and only ever partially responded to Urso.
After 7-8 years LFTS deteriorated significantly ie ALP nearly 700, GGT 300, Albumin dropping ( and I felt appalling - my husband almost scraping me up off the ground after work!) - my Dr recruited me into the OCA trial and within 12 months of taking the active drug - randomised to placebo for first 12 months- my ALP had floated down to just under 300. My Dr says I have responded amazingly to OCA and believes my liver would have failed without it. I have never experience itching as a side effect.
So pleased to read a positive story for OCA, i hope you are continuing to be well. i was looking for any positives, my consultant really left me to decide.
My liver is cirrhotic - the OCA of course could not reverse the widespread damage already wrought but it has most definitely stabilised the disease and I would be in a much more dire situation without it. Importantly I feel much better, continue to work and enjoy my large family !
Hello Stella, yes there are a number of different protocols for deciding if someone is responding to URSO. Obviously the ultimate would be all normal bloods, but not everyone achieves that.
My doctor went by the Uk-PBC figure of an ALP no higher than 1. 67 above the upper limit of normal. An example: my lab has the upper limit of normal set at 116. So X (multiply) that figure by 1.67 gives you 193.7. Therefore, an ALP below that number deemed me as responding to URSO, although it was not in the normal range. Mine was considered stable at 170/180) for a long time then started to rise.
Remember though every lab has a different upper limit of normal, and your doctors may use one of the other protocols. Also remember the bilirubin and the Albumum play a role too, but thankfully those of mine are in the normal range. It’s only my ALP that is raised and now its over the (193.7) So I started to take bezafibrate last week. Hope that explains it. Hope this finds you well, take care.
Thank you. My doctor never explained that to me. My ALP seems to fluctuate between 159 and 180 these days. 5 years ago it was fluctuating between 129 and 140. So, its a slow progression. I've been on URSO for 3 years.
Yes, so far Albumin and Bilirubin in normal range.
Morning..So good to see you here. I'm sure it has been frustrating for you to have hopes of a medication working and then find out it's not a match for you. From what I know from your posts, you are a strong woman and will find the right course for you. As far as the Neutrophil Absolute Auto being elevated....were talking about white blood cells. They run to injury, inflammation,(ankle swelling???), infection little or large, stress. Perhaps it's nothing to be alarmed about.
Sending in all sorts of healing thoughts and angels to help you through this. Stay close and let us know how you are doing. Be well.
Hi Stella good to hear from you again and glad that despite it all you are functioning and doing most things. Be kind to yourself and enjoy each day. Big hug. Diane
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Good news Labs improved :)))
Need some guidance
Labs are normal
