Hi! I'm so glad to have found this site. I 've been on Urso for 6 months and my alk phosphatase steadily went down to 163. Now they are creeping up again. My bilirubin is still within normal limits. Any thoughts as to why? My Dr. said we would just watch it. I'm doing everything I'm suppose to as far as meds,diet, and exercise. Would appreciate any input.
Thank you so much!
My gastro said it is totally expected and normal for Alk Phos to fluctuate. Don't stress over it. Stay positive and stick with your healthy daily routine.
Best wishes!
Thank you so much for your reassuring words.
I wish my Dr. Had told me that.
I'm so happy to have found this community of kind and helpful people.
I will stay positive.
Hoping you are doing and feeling well and continue to do so!!!
Hi LorraineLouise, welcome! I think you'll find much help and information here from kind people who understand, and from the PBC Foundation.
Sorry to hear that your alk phosphatase (ALP in the UK) is rising after you had a good response, but I agree with iagra, it can fluctuate quite widely for no discernible reason, often over several months, and so this may just be a blip. As PBC is a slow-progressing disease it's usually fine to wait a bit and see, as your doctor suggests.
Longer term though, if your initial good response to Urso does fall away, as happens for some people, a discussion with your doctor about an add-on or alternative drug (usually Obeticholic acid - 'Ocaliva') is a good idea. There are some early good results showing up for this, so yes, don't worry, it's counter-productive for autoimmune conditions! Well done for looking after your health so well by the way, that's the best thing you can do to help yourself!
Feel free to give us a bit more info about how you were diagnosed and your antibody status (eg AMA M2, ANA etc) so we can get to know you a bit. Although most posters aren't medically qualified, there's lots of shared knowledge here and I've never once felt on my own with this disease since joining! Best wishes.
Skypony
Thank you so much for replying to me. You words are very comforting. I think I'm in the right place. Everyone seems so kind and interested.
My PBC was diagnosed last August. I had a colon resection due to diverticulitis. At that time the surgeon saw my liver and alerted my family that he thought I has chirosis due to drinking. My family just laughed because I am turning sixty and probably have had ten drinks in my life. Just never cared for alcohol.
I then had labs,ultrasound and liver biopsy.
Confirming my diagnosis.
The first month on the Urso was awful. Nausea,weakness,and felt lightheaded. I think my system has become used to the Urso because I'm feeling much better most days.
My Doctor dismissed my symptoms and I felt like I was losing my mind. So finding this site and just knowing that others have had the same symptoms is comforting. Not that I want anyone to feel like that.
So again thank you for your words of comfort and hope that you are and continue to do well!!!
I
Yes it's not nice when you know there's something wrong but you're not yet diagnosed. Many of us find out in a roundabout way, but your story is pretty dramatic! Hope you're better from your gut problems now.
Quite a few of us have had a 'settling in' period with Urso, and side effects often resolve - glad yours seem to be. One other thing worth mentioning; it helps if you have or can find a good hepatologist who understands PBC.
I'm doing well thank you, I'm also 60, diagnosed 5 yrs but had AMA (M2) 15 yrs, so I count myself lucky. Many of us share a journey of initial shock, then a period of adjustment, and finally a return to a happy state or wherever we were before. Actually, sometimes even better than before, because we look after ourselves well and really value life! Good luck and keep in touch.
Hello
I was diagnosed when I was 35. I am now 64. I'm in good health even though my alk phos fluctuates. It was up to 232 and my Doctor added Ocaliva and on my 3 month check up it was already down to 211, so I'm hopeful. I have had terrible itching, though. I don't know what to do about it. Does anyone else have that? Can anyone offer suggestions how to cope with the itching? I know it's aside effect of Ocaliva. Tbanks for any input.
Charlotte
Skypony,
I am going to seek out a hepatic doctor. I really feel it necessary to have someone who understands the disease a little bit better than my G.I. doctor.
I forgot to mention that I have had thyroid diseasefor over 30 years. I've seen on this site that many others have the same.
I have been practicing yoga for many years and I think that helps tremendously with stress.
Thank you again for your kindness. I hope you are feeling well and continue to do so.
:)))
LFT'S Going Up.... Rats!!! 😔
Feeling sorry for myself
Waking up because of the itching :(
Impending lab results
