Blood results /pbc

[7706170]

Hi everyone, first I would like to thank you all for your replies to my post titled pbc/urine infection, infection has now just cleared up(took 2weeks)anyways during this time I got my bloods done and my alkaline phosphatewas 192, so she is writing to my liver doctor, what I would like to know is this concerning I am a female. With thanks. 😊😊

[Becca75]

oh so glad to her the UTI has cleared up.

My Alkaline phosphatase number was up to over 500. it's now down to about 190. Don't panic until you see your liver doctor and you know what you're looking at.

[7706170 in reply to Becca75]

HI@becca 75, thank you 😀wow 500 is high is your health ok, I feel rubbish right now.

[Becca75 in reply to 7706170]

Hi I'm better in on degree and worse in another. My specialist said that I've had the best response to URSO that she's seen. But now that my numbers are down (still in the HI range, but at least 50% if not 60% of the numbers they were) she's able to track what they do now. My other numbers are continuing to slowing go down (by a number or two each month) but the alkaline phosphatase number (the highest one) continues to do nothing. It goes down and goes up. Which lead her to putting me on Prednisone for the Autoimmune Hepatits they saw in the liver biopsy but she wanted to see how much the numbers would go down with the URSO. AT this point she's not happy with that one number (which is the number for AIH in my case) so I'm on Prednisone as well as URSO.

My health isn't great but okay. I have all my side effects - from both diseases as well as the meds. I'm still working full time and have a part time job and I'm a single mom of a 10 yr old boy and a house to keep up with. I'm still doing it all - just learning to slow down when I need to. It's been rougher since the AIH diagnosis last week and the Prednisone - and now instead of taking it day by day - it's moment by moment. But I'm okay.

Thanks for asking Why do you feel bad? I think it's good that your dr is following up with a liver dr though Keep me updated as to how it goes!!! If you need anything let me know

[lisababs in reply to Becca75]

Hi i have both too. I am on prednisone 7.5 mg and urso 750 mg. I was told i have to stay on prednisone all my life. I feel ok. Taking full time course and working part time. 3 yrs ago my liver nearly failed. I wasnt taking my corticosteroids so they were upset. I was flown to Toronto to get assessed and was on the fast track. I was going to see about taking low dose naltroxone. I heard it resets the brain opiate recepters and tricks the body in a different way as it stops attacking itself. Read on it. I an 46 swf and have a future and no bf due to this and my caput medsea. I hate this and what has sutfaced over the yrs. I am grateful i am alive though!

[Becca75 in reply to lisababs]

I am taking 1500mg /day of URSO for PBC and 20 mg/day of Prednisone. Once my month on Prednisone is done she'll re-evaluate which med to put me on for the AIH - she mentioned Prednisone at a lower dose (but it has to be eased off of VERY slowly even when going to a lower dose) but that I'd be on it for the rest of my life.

I'm not sure this is the reason you don't have a boyfriend ... if someone is going to be with you - they're going to be with you through all of this - Maybe he just hasn't found you yet

[lisababs in reply to Becca75]

I hope so. I have been very bisy and my looks from the varices in my lower abdomen are noticeable. Predisone i was started on was 75 mg and titrated by .5 over time. I am down from 180 on prednisone to 135 now. The edema was awful and i have the tummy area is very concernjng. I am glad you are doing well. Dont gp off the corticosteroid as that will set u back.

[Becca75 in reply to lisababs]

thanks for the information - ya I learned from missing my meds that one day not to do that again...

She said the decline will be gradual when she does wean me down from 20 mg to hopefully like 3mg

[Hidden]

ALP numbers can vary from time to time, what were your numbers before the infection, taking medication could have made the difference.

Mine have never been back to normal the lowest I ever got was a recent retest with a level of 204, even when it lowers you still ask yourself is that a good or bad thing.

Mine has always been between 250 to 259 for seven years so I wouldn't worry to much I think it's a bigger picture of how all the levels are that is more important than a single ALP reading. I keep reasonably well and worked full time until I was 62.

Its good that your GP is prepared to ask your consultant to check it, mine wouldn't have done.

[Rockie]

Hi All. My ALK Phosp was at one stage during 2010 as high as 1043 (and I am still here) now it is down to 265 (the lowest it has ever been, and I also think will be, due to the auto immune.) We must try and stress less about these counts.