Elevating alp/alk

[Jennyhadenough]

Am I rejecting Urso or is it quitting on me?

My alk elevated 20 points two months ago, now it’s 91 which is 10 points higher than last month. Still in range but elevating.

How did you all/alk elevate when you learned that you are not responding anymore

[Ktltel]

Hi Jenny,

Mine wouldn't go down for a while. But, now it fluctuates up and down between 158 and 193. These last 4 months it's been going up. I wonder if weight has anything to do with it? When I weigh less my alk-phos is better. When I weigh more it's higher. And this is with adjusting my URSO to compensate for the weight changes. How are you feeling?

Stella❤

[Jennyhadenough in reply to Ktltel]

I lost 15 pounds. When I was in the hospital, they gave me cipro. I told the nurse that I did not want that. I am off of prednisone but now taking budesonide and back taking azathioprine. My head is hurting everyday. How are you? I don’t hear much from you. I don’t want to bother anyone

[Ktltel in reply to Jennyhadenough]

Hi, I'm having labs now farther apart. Every 3 months now so I'm not on HealthUnlocked as much as I used to be. I was totally obsessing about everything. Reading so much and focusing so much on PBC wasn't good for me. Even now with being a non-responder to URSO AND Ocaliva... I'm not focusing on the negative while my numbers stay within a certain range. I know should that change down the road I'll probably stress out about it. For now, I touch base on here every so often. Especially when I see newbies who post. They are stressed and panicked. I can't help myself, I feel the need to inform them, help them understand the reality of the disease. Everyone is different though. Some do have a lot to be worried about for sure. I sure hope they get your situation figured out Jenny. Please let me know what's going on when you find out. I'm hoping the new drug Seladelpar gets fast tracked soon. I need something else to try.

Stella❤

[LorraineLouise in reply to Ktltel]

Stella

I too have never had my labs go to normal range and dr says they will never be normal due to the cirrhosis.The alk phas goes between 175 -200 for the past three years. Also I read on this site and told by my drs. That the numbers are not always a direct reflection of what’s going on with the progression of the cirrhosis . Some people have their numbers within range and they get an ultra sound and their cirrhosis has progressed. So I guess my point is that I totally get not stressing about it. Serves no purpose .I just go on enjoying my life. I take my Urso, eat clean, do yoga and do not think about the future too much. Nobody is promised tomorrow with or without PBC. Wishing you all the best and peace in your heart.

Lorraine

[Candy12]

My ALP went from 170, to 190, to 258, the last one in February was down to 205. If the next one at the end of May hasn’t gone back down to where it was, I will be starting either fibrates or OCA as a non responder.

In my case i don’t think it’s it’s the actual number, but the upward trend over the year, that has been the deciding factor. Thankfully all other results are still in the normal range.

I always wondered if I ever fully responded as mine stayed around the 200 mark for the first 5 years, then dropped to 170 after I lost weight, but that put me on the optimum dose of URSO so I stay on it at that level now.