Hi guys, I'm wondering what is your ALP number at the time of diagnosis?
I'm currently AMA-M2 positive and not officially diagnosed. My ALP number seems to be in the normal range ( 50 ~ 135 for female ), but the numbers are somewhat close to the upper limit.
These are my consecutive 8 years' ALP number: 86,90,104,99,107,102,102,86
Are they too high ? I've seen healthy people with ALP number around 60.
Thank you guys! Best wishes to you all!
Hi,
My ALP at diagnosis was in the 800's . Went higher at one point, lowest it had been in 7 years is 280.
Thank you Angel46! Really appreciate it!
Your welcome x
Sorry to hear that Angel. Did you get to try one of the other medications as well as Urso?
Yes, Kakey,
I have been changed to ocaliva,only been on 2 months so unsure how it is doing. I go doe bloods monthly but never bother phoning for results. If there was an issuse my doctor phones me.
They seem normal to me. You have only slight variation over 8 years, which is encouraging.
Mine were high 300s at diagnosis. I don't have a lot of info about my position due to being diagnosed during lockdown.
Is your AMA result high? I read (sorry I can't remember where) that a low AMA can have other causes, and a high result is likely to ultimately be PBC.
Hi Kakey, I am not sure what tier of my AMA-M2 result is because it is not printed on the lab result paper. It just says it's positive with three 'plus' sign (+++). I guess it means 'high'.
Or maybe I'll take another test when I see the doctor.
Good Morning....If only my ALP were as low as yours! My highest has been in the 800's with my low at around 380 since this all started. I am AMA NEGATIVE. I'm also allergic to URSO.
Right now ALP runs in the low 400s. My liver scans are normal. My of LFT's are also high. Sounds like it's time for you to relax a little. Unless those LFT's get crazy, you most likely are worrying about something you don't have. Be well
Hi, mrspeffer2, thank you for your reply. Sorry to hear that you are allergic to URSO.
Are you taking Ocaliva now ?
No, can't take that either. So I use supplements and eat well. Nothing they can do for me
I saw your profile and you said you were diagnosed for over 22 years. Were you unable to take URSO for all these 22 years? It's good to hear your liver scan are normal. Would you please tell me some details about your diet? I'm learning about diet for PBC, thank you very much!
That's right, i've never been able to take the meds that are used for this. I eat really basically vegetarian. Sometimes that is more vegan, sometimes raw. Lately I've been using pasta made from cauliflower and pea protein. It changes. what doesn't change is i do not eat animal products. Not for any other reason than I cannot digest them well. I also avoid gluten, sugar, soy, corn, peanuts, sugar dairy. Eggs are another one I should avoid, but I like them with warm almond flour tortillas. I'v recently started using a supplement called TUDCA. It has been studied in relation to PBC with positive data. I take 250 mg daily, more seems to bother me, but I have had a small drop in LFT's since starting. I'm getting ready to increase that dosage to see how I do. There is lots of literature available on different diets for autoimmune disease, most point to eating foods that do not cause inflammation. Best of luck on your journey. Be well
Thank you for your helpful information, best wishes to you, mrspeffer!
And may I ask why can't you take Ocaliva? Is it because of the itching problem?
Let's just say that sometimes the cure is worse than the disease
My ALP at diagnosis was 650. It's went down over the next couple of years and recently spiked up to 350 and now 300...I think your numbers look awesome.
Hi, 4pjx__ , thank you for your reply! Glad to hear your ALP are going down. Best wishes to you!
Mine was also about 800 at diagnosis. Now at 350 after 5 months on urso. If under 200 after next bloods they are happy, if not I'll get an add on medicine.
Hi hells456, thank you for your reply. I hope yours drop below 200, best wishes!
My ALP at diagnosis was somewhere in the 60s. Nine years later, the highest it has been is around 80 or 90 — always in the normal range. I was diagnosed with biopsy at stage 0. I've also been told I appear to have a milder variant of PBC, which on labs looks more like AIH because it's my ALT and AST that tend to be slightly elevated, or at least not optimal, and my ALP is solidly normal.
Hi periwinkle88, thank you for your reply. Glad to hear that your PBC is a milder variant. Were you diagnosed with AMA-M2 positive ? Are you expeirencing any symptoms like fatigue or itching now?
I think it was just AMA, not AMA-M2. But the PBC was confirmed by biopsy. I rarely get a bit of itching on the sole of my foot. I wouldn't say I have much general fatigue either, though I also have Hashimoto's, so if my thyroid is off, then I get a little sluggish. I think my diet helps everything — paleo with additional restrictions of foods that don't work for me.
Thank you periwinkle88, I'll try to google about paleo diet. Best wishes to you!
A good place to start is with Phoenix Helix (Eileen Laird) and The Paleo Mom (Dr. Sarah Ballantyne). Both have websites and podcasts and oodles of information on diets for those with autoimmune diseases (the Autoimmune Paleo Diet).
Thanks periwinkle88, I really appreciate it!
HiYour post is from 2 years ago , but do relevant to my case
My journey began in nov 2021 when my ast alt were slightly elevated ( I have my blood work done yearly)
Next was Fibroscan 24,7, cirrhosis
Next was MRI showing cirrhosis again, bile ducts normal, only mild dilated in one area
Finally AMA and aih tests came positive for antibodies
Still waiting on hepatologist
But even if my gp prescribes urso, how could you see a progress if alp and ggt has never been elevated?
I don’t have any other symptoms for now, but apparently my liver is cirrhotic already
How was your case treated?
Any advice?
Thank you!
Hi Cat1966,
When I started taking ursodiol my ALT and AST both came down to a normal level within a month, so that's one way you can tell if something is helping. (Though, they weren't super high to start with, just a bit out of range.) The other thing I'd suggest is looking into diet—at a bare minimum cut out gluten and dairy, but if you're committed then go further than that and delve into the autoimmune paleo diet (AIP). I've read about people with AIH who reversed their diagnosis with the AIP diet. I only have PBC so I can't comment further on AIH, but I do feel like figuring out my dietary triggers and removing them has helped keep me at an early stage with PBC. Sorry to hear you discovered your issues after you've already progressed to cirrhosis, but it seems that many people live well with cirrhosis for many years. Take care!
Hi,Thank you for your reply!
I will definitely look into paleo as you suggested.
As for dairy, have you excluded all, even low fat, and yougurt, kefir?
I am still awaiting for a hepatologist appointment, but a friend of a family , who happened to be a doctor himself, has PBC.
He suggested I have an overlap of AIH and PBC, and that I should ask my GP for an urso prescription to begin with.
He also suggested a Heptlar for PCB.
Have you heard about this one?
Yes, all dairy. If you read up on the autoimmune paleo protocol you'll understand why. (Check out Phoenix Helix's website, podcast & books, same with The Paleo Mom--Dr. Sarah Ballantyne--though her website is temporarily down due to hackers.) Once you remove dairy for a while you can add it back in again and see if it causes you to flare/increased inflammation. The same with gluten (read up on molecular mimicry and gluten) and other dietary triggers. And, no, I've never heard of Heptlar, though I'm in the U.S. so maybe it's called something else here?
I ll definitely look into it.
I started watching for gluten some time ago, and remove dairy from my diet should not be Problematic.
The other name for Heptlar is Ademetionine
I believe Heptlar is a brand name by a manufacturer.
I ll research further on this.
Thank you for sending the info on Paleo diet.
I was diagnosed 4 years ago. My numbers are always just under 200 on Urso. My Drs are very happy with these results.
Thank you very much for your reply, LorraineLouise!
May I ask if your are exeperiencing any symptoms now like itching or fatigue? And If you are, when did the symptoms start?
Mine was 360 high positive mitochondrial. Now after Urso, it's been 150
Thank you for your reply, anoush!
May I ask are you experiencing any symptoms now ? like itching or fatigue?
I do experience a weird kind of fatigue almost like I can't feel fully awake. I also itch, especially my head. The weird thing is the fatigue is constant but the itching seems to vary in severity. I'm losing my hair also it's really thinned. I think that may be the Urso
Yes that might be the Urso. Were you experiencing the symptoms at the time you were diagnosed?
Yes I was the nothingness much worse then so I think the Urso helped. I also have Sjogrens and Scleroderma. I developed an inflamed gallbladder, had it removed but when my Alkaline phosphate remained elevated and this ache in my liver persisted I asked to be tested for PBC because I knew with autoimmune I could develop it and sure enough I had it. I was wondering have you had that ache? Mine comes and goes. For the longest time I couldn't lay on my left side it felt like something was pulling in there
My ALP was 489. After a week of being on Urso it dropped to 333. I'm having blood work done again today, just over a month of being on Urso. I have severe fatigue, joint pain and only a very slight itch that is hardly bothersome. My fibroscan score was 21.3 (stage 4) at diagnosis.
Hi HeenansMomJust read your reply. You are tbe first person with a similar fibroscan to me at diagnosis. Mine was 19. My ALP was up at 801 but dropped to 282 after a month on URSO. kind of panicking about stage 4 and the Cirrhosis think. Can I ask if you are still okay?
I was diagnosed with PBC in Dec, because of elevated ALP & AMA. Had a biopsy last week. It came back as, "inconclusive."
Cost of Ocaliva in the US.
The mental side of PBC
Specialist recommendations in U.K. 
