Sudden rise in ALP

[dreamy]

Hi everyone, I am a non responder to urso and my liver numbers have been gently increasing for the last 5 or 6 years. In January my ALP was at 350 and my ALT and AST were high end of normal, My test results from the other day show my AST and ALT have jumped about 10 points each to 42 ish and my ALP has shot up to 642, Has anyone else had this happen? What was the reason? I see the specialist again on the 7th June but would just like to get a heads up. Thanks Melanie

[Karaliz]

Hi dreamy. I was diagnosed 13 years ago and have a somewhat similar tale. After 8 years on Urso, my LFTS deteriorated significantly. ALP - 690, GGT- 288, Alt- 89, Albumin dropped to 30 ( Australian references). Also felt very unwell which I hadn't previously. After extensive imaging including US, MRI and Fibroscan , a liver biopsy revealed progression to stage 4 and cirrhosis. My consultant, too, refers to me as a non responder and I was fortunate enough to be recruited into the Obeticholic Acid trial (OCA). My LFTS have come down since commencing this drug. I suppose there could be various reasons why your LFTS have increased, dreamy, and my experience is only one trajectory of this puzzling disease. I imagine your consultant will undertake various investigations. I know my Dr did wonder if I might have autoimmune hepatitis ( I don't) which is also why he ordered the biopsy.

Wishing you all the very best and let us know how you get on.

Karaliz

[Gilz1702 in reply to Karaliz]

Im exactly the same. I was diagnosed at age 32 which was 10 years ago. Poor responder to urso. Waiting on further blood results to see if I need to go on different medication, although my understanding was that urso is the only medication. My diet has been pretty poor recently so sticking to low fat from now on. Wil be interested in people's responses to you dreamy.

[Suziebeau]

As someone has mentioned there is a new drug that has it been developed for non urso responders, OCA, if you contact the PBC foundation I'm sure they will give you information. I don't think it's available through your GP in the UK yet, but your specialist may be able to get you onto the trial? It could help bring your number down again?

[dreamy]

I'm currently doing two study trials and just starting a new drugs trial. This isn't the OCA one, but one being developed by cymabay. I have only had the screening visit for this one so it can't be this drug causing the rise as I haven't taken any yet. Re the OCA my specialist at Birmingham said that it would probably be available for us in UK next year. I was just really wondering at the causes of the huge hike in results...my ALP normally has been rising about 10-20 points each 3 months and then suddenly this nearly 300 point rise. I am having a lot of US, fibroscans and MRI as part of the studies and nothing untoward has appeared yet (MRI only done Wed, so don't know about that yet) and haven't changed my lifestyle at all...

[Becca75]

I just started taking URSO in the last month - i don't know yet if i'm responding to it. all my numbers have been increasing over the last year but my dr. isn't worried about them - meaning the small increases because they're within a range she said. she said some fluctuation within a range is okay. (i was stressing out because they've all been climbing). But the ALP number has jumped a bit for you- i hope your dr can give you some answers as to what that means for you.

so if you're not taking urso are you taking anything else (like a clinical trial med)

[dreamy in reply to Becca75]

I am taking URSO, I don't respond to it though, and in a couple of weeks I will take my first dose of the trial drug (provided I pass all the screening they did on wednesday), as it's a blind test I won't know if I'm actually getting the drug, unless it works... very exciting times for PBC research at the moment.

[cazer]

Hi lm 52 been diagnosed 17 years now classed as non responder although i yhink urso has kept things at bay for most of this time..

I was told i was srage 4 all that time ago and i personally tjink that by pacing myself drastically ive kept the liver going longer.l know uf l asked about yhis theory i would b told im wrong but thats mu thoughts.

Hiwever now the damage is such that just eating trying to keep warm and stay alert enough to feel im awake is just beyond my livrrs capabilities!!!my alp has gone from 441 to 614 in 2 weeks also albumin now 31 bilirubin 33 eyes starting to tinge and some other bld tests worsening.i go fir chfck up qe on monday anf hope they will put me forward for asessment

Also not sure of significance of alp 614 ? Anyone know.cheers xazer.x

[Karaliz in reply to cazer]

My ALP was 690 before commencing OCA ( trial drug) .. Elevated ALP points to significant inflammation of liver. Best wishes , Karaliz.

[cazer]

Oh should have said im not being put on trials as have quite sensitivity to a lot of drugs.cazer

[DPcpa]

I was dx with all at 586 but am only stage 1, possibly stage 2. My alp jumped from high (196) the day after I delivered my daughter and had 3 liters of blood transfused, but in the time since I had it reran, about 3 months it went that high, I was rx fluconozole for a yeast infection on my breasts, and took various he's that my IBCLC had me on for lactation. I am asymptomatic and believe that my levels will be great when I get bloodwork done this week after approx a week on ursodial all that to say, I don't think levels correlate to liver damage necessarily

[Hidden]

I responded really well to Urso at first - from a high of 800 alk phos went down to 200. Mine have shot back up in the last year and I think a large portion of it is stress due to my mum dying, and then not looking after my diet so well. I was really restrictive with fat for the first few years and have not been so careful. No jaundice yet, though I've had tinges on occasion.

Got a biopsy in a couple of weeks and hope to try out one of the new trial drugs, I guess. In the meantime trying to make the most of every moment.

As someone said you are in the worst phase, the first shock. it does get better, as you realise this is a slow disease, lots of people live with chronic and progressive conditions, and there is a lot of life to thoroughly enjoy even with PBC.

[WendyMarie]

Hi, According to my hepatologist, many things can cause the ALP to suddenly jump. About 2 years ago, mine went from 150 to 572 in 2 weeks, due to taking OTC drugs for the flu. I took them every 4 hours for 3 weeks. The Dr. said even people with healthy livers will have elevated ALP when taking meds for a prolonged period. After I stopped taking the meds, it took about 3 months for the ALP to come down. He also said that the ALP is not a big concern, but the most important thing to watch is the bilirubin & albumin. People with normal ALP can have cirrhosis & patients with high ALP can have healthy livers. He also said that it's not unusual for his liver disease patients to have elevated ALP well over 1000 @ times. So try to relax & not worry, although I know that is easier said than done!

Wendy Marie

[DPcpa in reply to WendyMarie]

This is interesting since my dx all came in the span of 2 months when the doctor told me my tests should be coming down, but at the original test I was taking meds, I stopped immediately when liver tests Hugh but because AMA m2 positive they dx PBC, I have no symptoms what so ever. I started ursodial about a month ago and will retest Monday, be interesting to see the results. I also will be seeing a hepatologist, not the gi doc that dx me who quite frankly seems a bit daft.p, so I'll ask about this,

[islandanonymous in reply to DPcpa]

I just wanted to thank you for passing along all the info your doctor told you. My doctor told me basically nothing when my ALP started rising after 11 years with PBC and cirrhosis. I hope you are doing well.

[Ktltel]

Just wondering how you are doing these days. How OCA worked out?

Stella😊