Pbc: Hi every body hope all are ok Has... - PBC Foundation

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Hi every body hope all are ok

Has anybody after a few years still got high alt and alp s

Mine are 303 alt and 244 alp

23 Replies

Hiya, My alp is still higher than it should be (254), ive been on urso nearly 2.5 years. Waiting to hear what second line therapy my consultant will suggest. I don’t know what my ALT is now, they don’t tend to focus on it. Have you got a plan as to what they are going to do for you? X

Hi thankyou for responding. I'm on ursal and have the powders to stop the itch. But my consultant is waiting to see my bloods again in October before more treatment

My consultant has been waiting and seeing too, now I’ve got to the stage where I don’t want to wait any longer. How long have you been on urso?

I was on it 4 years but came off for 6 months and then went back on it

How long have you had pbc and aih

Hi Janine541

What meds are you taking just now for the PBC and what are you taking for the AIH ?

janine541 in reply to Angel46

Hi I'm on ursal and questrain light. Not on anything for AIH because I only had traces in my liver biopsy

Angel46 in reply to janine541

Maybe time to start you on some. Your alp didn’t look too bad, I was on Urso for 6 1/2 years and didn’t get to that, I’m now on Ocaliva for pbc and been on azathioprine for the aih ,

janine541 in reply to Angel46

Are what are your alt and alp please

Angel46 in reply to janine541

Now my alp is in the 300’s not sure what my alt is at moment . I am overdue my bloods, I get them taken monthly.

The Ocaliva has dropped my alp as it had started going up with the Urso and Urso never got it down to acceptable levels.

Can’t remember what my alt was when I was diagnosed with the aih ,when I was I was put on steroids for about 6 months and the azathioprine. After I stopped the steroids I continued with maintenance dose of azathioprine .

janine541 in reply to Angel46

I've had a phone call today from my consultant she wants an urgent review

Angel46 in reply to janine541

I’m not surprised with your alt number which I reckon is your aih. I won’t be surprised if you get put on a course of steroids and immune suppressants . Please keep us posted .

janine541 in reply to Angel46

Aww thank you for the reply . I was always told that this was a slow progression.

I have been on Ursodial since 2016. My levels are all within range now but increased whoever I gained weight and an ultrasound showed fatty liver. I lost 36 pounds and my liver is no longer fatty and the Urso has my levels down thankfully. Now I have PBC and the fatty liver to always keep in check. I’m still grateful!

Can I ask to you all work full time

Ellewoods1 in reply to janine541

I retired January 2018.

janine541 in reply to Ellewoods1

Did you work full time upto your retirement

milo2002 in reply to janine541

Got ill health retirement nhs . Work a bit part time . Cannot do a full day

janine541 in reply to milo2002

That's good. I have a sleep in my 1hour break

The number for alt is very high are you sure its 303 i think it should be 30 approx.

Yes I got the results from my doctor

I'm under st james in leeds and they want me to go for an urgent review

Well my consultant phoned and as ordered a liver scan for this week or next and more bloods.

He said I may need another liver biopsy

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