Alkaline phosphate number ??

[Mnoye]

Hi just wondering if someone Could help, I was diagnosed 3 years ago but only just about to start URSO. Just received letter from consultant which stated my alkaline phosphate was 197, consultant has never explained much about PBC or what the numbers mean. Is this normal number or high ?? Thank you

[Sona_akb]

Mine was 260 at the beginning and dropped to 134 at the moment. So I think yours is not that much high. Take care🌸

[hells456]

Hi, I'm new to this too, only diagnosed a few weeks ago. My blood test result is 771 and includes a bit that says the normal range for ALP should be 30-105. Yours is above where it should be but I think the URSO is supposed to bring it down. I have no idea what the ALP actually means though.

[BHS1967 in reply to hells456]

ALP is alkaline phosphatase level. It is a protein found in all body tissues but becomes higher in liver, bile duct and bones.

[Ballymahon2]

If you were diagnosed 3 years ago why are you only starting urso now

[Mnoye in reply to Ballymahon2]

I kept questioning it with the consultant and he just said I don’t need it, he never explained to me what PBC really was so I went home and googled it, then panicked, then joined this group.

[Hidden]

Mnoye, PBC Foundation and it’s specialist advisers tell us that 200 is acceptable ALP for us with PBC.

Can I ask you to get in touch with Robert at PBC Foundation? He will be a great help to you, and you will be a great help to him. He will be very interested to hear how your case has been followed up over the past three years. The more info we can give Robert, the more it helps us all to get the treatment we need. It sounds very unusual, your experience and Robert will certainly be able to help if you contact him. Best wishes.

[Gioielli]

Different levels are used in different countries but if live in UK then ALP should be below 130. I started on URSO when level was nearly 800. Now at 87. Still on it but also on Bezofibrate which helped to reduce my level from 207 to 91 in a month last year.

[Candy12]

The upper limit of ALP depends on your lab, even in the UK, I would suggest you get a print out of your blood report this will give you the upper limit of normal used by your lab.

Just to show the difference that can occur, at the lab used by my consultant the upper limit is 116.

I would echo Filistine, join and speak to the pbc foundation they well be able to help, they are fighting hard for us with pbc making sure we get the correct treatment in a timely manner and that we are prescribed it in the correct dosages.

[Cathycomehome]

Hi,

I was diagnosed last October but still not prescribed Urso yet ... My alp was 195 in October , 153 November and 142 December ..... fibroscan 6

Just waiting for results of my Mri and consultant to advise ......

This forum is a wealth of info along with the foundation .... We have to do a lot of research ourselves !! !

[June9961]

Actually it is really quite good. For the past 18 years I have hovered around 164 to around 295 and my consultant is quite happy with that as am I. I was on 7x 250 mg urso for most of that time until I found from PBC foundation that the correct dosage should have been 5 a day on the weight I was on. My blood test last week showed I was at 213 but the best bit is my weight has gone down and I should probably now only be on 4 but quite happy with the 5 for now. Surprised though you only got started after 3 weeks.

[kiwivivr]

hi

Very disappointing that the doctor has not told you much. Perhaps he or she doesn't know much themselves about PBC. You should get to see a liver specialist of some type.

Firstly though, don't worry. We live with this disease, most of us don't die from it.

Regarding URSO it works for about 60 or 70% of us. (It works for me), and is good because it slows the progression rrate fo the disease. You should have been prescribed the Urso at 13-15mg /kg body weight. (I'm 75kg so I take 1000mg per day. ) The hardest part is remembering to take the urso everyday.

I suggest you join the PBC foundation pbcfoundation.org.uk/ These people have heaps of great easy to read and understand info about PBC.

There are also heaps of facebook support groups. (Maybe try and find one in your country, then you might also b able to meet someone with PBC for your own support. )

Welcome to the PBC World

Viv

[Mnoye in reply to kiwivivr]

Thank you, I’m in Essex England, and we only have a gastroenterologist consultant, same guy I’ve been seeing for 3 years. My gp doesn’t really know a lot about it, so I just hope my consultant does. I do have scan ( gallstones) every 6 months and blood test, s as nd then see my consultant but he never really tells me much, just asks me about dry eyes itching and fatigue x

[kiwivivr]

lol They do ask the same questions all the time.

I usually see a different specialist each 6 months. (Its just our system I think, I'm in Auckland New Zealand). All the young doctors doing a specialist stint a the liver transplant unit. Though there have been a couple of times when I have seen the same older doctor. all the newbies have a new idea of blood test that need to be done. Personally I find it quite amusing). My PBC doesnot affect me very much, they only symptom I have is dry mouth at night, so I dont worry too much about these young doctors learning. And meanwhile I learn heaps from the PBC foundation, from others on Facebook support groups and a couple of people I know with PBC. (found 2 people I already knew on the Australian and NZ PBC Facebook support group). Its a small world down here. lol

[kiwivivr]

try this one to learn abouteh Alkaline Phospate levels. pbcfoundation.org.uk/newly-...

[Ash322]

Hi there. Couldn't tell you what my numbers were but I was diagnosed probably pre 2016. I was put on Ursosan and since then they have been happy with my levels. Recently I asked if I could come off the pills because my weight had gone up. They said to give it a try but my levels went back up so have gone on Urso again. Doesn't bother me. No side affects. Obviously not the weight, cause I didn't lose any in a month. I've been on so many different things for my COPD and heartburn, it could be something else. Hard to up my exercise because I have Osteo necrosis in both knees. A knee replacement is coming up soon.

[Mnoye in reply to Ash322]

I have read a lot about weight gain on the medication which I’m not looking forward to especially as I’ve been on amitriptyline for years and my weights gone up anyway , hope you knee replacement works well

[Ash322]

The main thing is that the liver is under control. I've just got to figure another way to lose weight.

[billhunter]

It seems a bit high but nothing like levels that I have seen. Try to keep calm. Take the tablets. Go for another test. Keep a record so that you can see trend. Best of luck, William

[June9961]

Hi that’s usually where I hover around until this blood test where I have shot up. Going for a scan soon.