ALP raise 😭😭😭😭😭😭😭: Hi everyone. I’m... - PBC Foundation

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ALP raise 😭😭😭😭😭😭😭

Sona_akb
Sona_akb

Hi everyone.

I’m stage II pbc, diagnosed 1.5 year ago. My first ALP was 265 and went down to 133 by treatment. But in my recent lab, it jumped to 141. Also AST and ALT are raised a bit (40 and 60). I’m so upset and can’t stop my tears. What happened to me?!!

Is it usual to see fluctuations like this?

Also I was so stressful these days because of Cronoa virus 🦠 epidemics in my country. Can it be related to stress?

Also must mention that the recent labs are done in a different laboratory from the other ones, but with same reference values

52 Replies
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Hidden
Hidden

Hi Sona_akb,

I know its hard to calm down just because someone tells you to do so but try and calm yourself down a bit. Stress does cause flares. Your bloods are not raised that much ,at one point my alp was nearly 1300 and i was averaging at 300 when under control until past 6 months when they started to raise again. My point is not to panic, the doctors will be keeping an eye on your results and make changes too meds when required.

The coronavirus is a worry for all of us who are vulnerable and we have to take extra precautions. Did you get the email from PBC foundation explaining about washing hands ect to help reduce infection ?

I send best wishes

Take care

Angela xx

Sona_akb
Sona_akb
in reply to Hidden

Thank you I always share my worries here and get good feedbacks from you guys. I can’t imagine how could I handle without you❤️❤️

Yes I do lots of washing and just stop to wash my hands when I’m sleep😂😂😂

Hidden
Hidden
in reply to Sona_akb

😅😅😅 keep washing.

My hubby panicking more than me. Keeps telling me to get hand sanitiser but shops have sold out, ill stick to soap and hot water 😁.

Xx

Sona_akb
Sona_akb
in reply to Hidden

My husband and I are both working in hospital and get the alcoholic hand rub for house. Although I have lost almost all my smelling sense It still smells bad 😂😂 but there’s no other choice.

Hi it’s usual to see the labs fluctuate so I would try not to worry too much, they say in PBC the aim is to get the ALP under 200 which yours still is so that’s good, my last ones jumped from 139 to 182 & my consultant isn’t worried. I don’t know if stress can cause changes with it but I hope I have made I feel a bit more at ease x

Sona_akb
Sona_akb
in reply to Karaxxx

Thank you for explaining. I started hard exercise 4 months ago and watched out on my diet strictly and didn’t expect any raise😢 I just can pray for alp coming down next time. Starting the new Persian year with so much sadness in couple of weeks

Hi Sona!

I agree with Karaxxx. Under 200 is actually pretty decent for ALP. I just had my labs done and my ALP actually climbed from 150 about 6 months ago to 300. I have my fingers crossed that it goes down by my next visit. They say it's possible. I'm thinking you're okay.

Try not to cry.

Hugs,

Pam

Sona_akb
Sona_akb
in reply to 4pjx__

It was so frightening for me. Every other times it used to come down slowly and was so calming for me. I’m just like you finger crossed to see it goes down next time.

Thank you for replying

Hidden
Hidden

Please try not to worry, easier said than done I know. My son is worrying more than me about the coronavirus, have put his mind at ease by showing him what the British liver trust have written. Love and hugs Lynne xxxx

Sydgal
Sydgal
in reply to Hidden

Hi

What has the British liver trust wrote?

Thanks 🙂

Deep breath. I was diagnosed in 1999 with stage 3 PBC. I'm still alive and kicking. I religiously take my Urso every day, exercise, eat right, control my weight and life is basically good. Over the years my alkaline phosphatase (I assume that's ALP) has varied from between 210 and 130. My AST goes from 30-60 and ALT from 35-70. It's just the way it is for us PBCers and I stopped worrying about it a long time ago. I focus more on bilirubin and albumin which for me me always runs on high side for bilirubin (0.7-1.2) and low side for albumin (3.4-4.1). So, my best advice is lead a health life, take your Urso and don't worry about your PBC until you have to which I predict will be many many years from now, if ever, Charlie in NC, 74, stg 4

Sona_akb
Sona_akb
in reply to bassman45

Thank you dear Charlie, you’re advices are so calming for me🙏🏻🙏🏻🙏🏻

So you say it’s usual to see those fluctuations... it’s good news for me🙏🏻

Sydgal
Sydgal
in reply to bassman45

Thank you for sharing your positive story 🙂👍it gives us new PBCERS hope.

OHIO1919
OHIO1919
in reply to bassman45

Thank you for your comment😌

Dear Sona,

Please check this post I just wrote to the community, because this topic appears so often :

Everyone with PBC and increasing ALP should ask for the combi-therapy with Bezafibrat.

Your doctor can prescribe it with the diagnosis: metabolic fat disorder, so to avoid that it is not yet approved for PBC, because studies are so expensive for this cheap medicine.

(We all Pbc-ers have metabolic fat-disorder).

It helps so many of us Pbc-ers.!!

Get supervised under this additional therapy, as some people react with higher liver-labs. These then must stop or take less. Check at least after 2 weeks taking it.

See this Medical journal:

nejm.org/doi/full/10.1056/N...

Scroll this one to see: conclusion.

Combi-therapy works wonders for me and also many others.Please give it a try.

Sona_akb
Sona_akb
in reply to gardenfun

Thank you for sharing this post.

When did you get on fibrates? I mean in which ALP level or how much duration with raising ALP?

This is my first time ALP raising in 1.5 year treatment

PBCRobert
PBCRobert
in reply to gardenfun

For anyone reading this, please know that not everyone with rising Alk Phos should be on bezafibrates.

First off, the raise in Alk Phos could be caused by a huge number of reasons, not just PBC.

Secondly, beza has liver toxicity and kidney toxicity issues so not everyone benefits. If you are on bezafibrates you need your blood checked very regularly to begin with.

Thirdly, it does not have a licence for use in PBC.

However, it has been used in a number of patients and can help biochemistry results. Whilst we do not yet know, we hope that this biochemistry improvement is the same as with Urso (as in we anticipate normal life expectancy).

Back to Alk Phos... Clinicians usually accept about a 15% change as standard deviation. If there are a number of rises consecutively then a clinician may want to discuss a second-line therapy with you. (Only OCA has a licence) They may also discuss with you opportunities to join a clinical trial, dependent on where you live.

There are a huge number of reasons why liver biochemistry changes: head cold, bruising, infection, meds or even supplements. One test result tells is very little about PBC. Your clinician will be looking for patterns.

As an aside, I hope you are all using the PBC App to record your results so that you can see your own graph over time.

Sona_akb
Sona_akb
in reply to PBCRobert

Thank you dear Robert. I don’t take fibrates yet.

My hep doctor wasn’t concerned about ALP and wants to repeat labs in 3 months.

He said to stop atorvastatin and vitamin supplements for a while...

Let’s see what will happen🤷🏼‍♀️ Wish me luck ❤️

I take it together with Urso since more than 4 years now, my ALP had before increased only very few (was then still in the normal range, thanks to 9 years Urso), but I read about Bezafibrat and PBC in a former study from France and quasi forced my GP to prescribe it to me. Which He thanks God did .

Since than I feel greater than ever, my itch is gone my ALT and AST are very low, so is my ALP and gamma-gt! I have back my old Energy as was it before the break-out of PBC. No more tired.

When I had musclepain with the Beza (can happem with all Fibrates, also with Statines), I just lowered the dose to 1x200mg per day. This works for me perfectly. ( My weight is 60 kg. )

Hope it helps you, too. Try it.

Sona_akb
Sona_akb
in reply to gardenfun

Good for you. I wish I could stabilize myself like you for 9+4 years. I just can’t deal sometimes and feel overwhelmed by all these stuff

My recently dropped from from 320 to 139 in 4 weeks after sticking mostly to a plant based diet. My Bili dropped from 2.2 to 1.1. It really seems to be working for me. AST and ALT still a little high, but overall labs are the best they have been since I was diagnosed 10 years ago. Was also diagnosed with AIH a little over a year ago. I would give it a shot and see if it helps. However, the bottom line is that our numbers will bounce around and I have been told time and again that it is not necessarily an indication of the progression of our disease. we really need to look to fibroscans or other mechanisms to track the advancement or re-treating of fibrosis.

Sona_akb
Sona_akb
in reply to danaLL

Congratulations for such an amazing improvement. I will watch my diet to see if it works it not. Thank you for replying

My ALP averages 575. I am in Canada so not sure if our labs use the same result numbers.

Sona_akb
Sona_akb
in reply to Pheebe

There’s two kind of ALP test in my region. One with upper limit if 105 and the other with something around 300.

My ALP had gone as low as 107. After that, I was going through an extremely stressful separation and divorce. My ALP shot up and AST was slightly elevated. So I firmly believe stress has an adverse affect on us. When my stress leveled out, my numbers came back down. They say it isn’t unusual fur ALP to fluctuate. But I totally understand your concerns. We all want our numbers to be normal. I’m not a good one to say “don’t stress”. I can be easily stressed to the point it controls me. I’m learning there is no good in that. I’m 65 and you’d think I’d have a better grip😅.

I feel happy for you overcoming your stress and getting better labs. Wish mine is related to stress too.

I’m now trying not to panic but coronavirus is a worldwide problem and I just can’t worry.

Yours isn’t high enough for concern from what my drs say. I started at 247 when diagnosed. My dr was happy when it dropped to 160. So be patient with yourself. Yes, coronavirus is a worldwide problem but we have to try and be strong and make preparations just in case. I’m scared but it hasn’t been detected in my city as of now, but I know that can change quickly. I would be a mess. You will be okay 😉🙏🏻

That’s great staying corona free in your region. Here we had more than 500 deaths during last month. Some states are restricted at the moment and no one can enter neither exit from ( don’t know the exact word for this situation, is restriction correct?)

Almost all jobs is being quite except for hospitals. Schools are closed up to next month.

Please you too be precarious and try to limit going out or being in crowded places for a while

Well, I’m not saying my city is free of it. Let’s just say none has been reported. I’m afraid it will be a matter of time. I’m praying not.

I know 141 isn’t that much high but I don’t want it to raise any more. Wish me luck in next labs.

.

Yes, the numbers vary all the time. Mine move up or down about ten points each time. I think fluctuations are to be expected. It's the big jumps that are alarming. I've had big jumps a twice in six years. When that happened, I had my blood drawn and tested every month instead of every three months. We never found a reason but each time, the numbers gradually came back down again to the normal-ish range. My doctor seems to be ok with me as long as the numbers get back to normal again.

Sona_akb
Sona_akb
in reply to littysgirl

Thank you for replying dear littysgirl.

It’s good news for me knowing that happens frequently.

In my opinion that is not a big increase and it is worth noting that sampling is not perfect, analysis is not perfect and your body varies according to time of day, diet hydration and so on. If it had gone down to 125 you would have been pleased but this can be a natural variation too. My advice is to look at the trend not just one result. Both the last and the one before are way down from where you started and I think are both in a "normal" range . Sounds good to me. Best of luck

Sona_akb
Sona_akb
in reply to zinchunter

Thank you for replying. I agree with you but it’s my first time seeing enzymes raise and I panicked at first.

Just want to make an update, my hep appointment was yesterday and he said if I’m taking any new OTC drug or herbs . Yes I’m recently taking Hairtamin which is a supplement containing vitamins and herbs. He said to stop it and then recheck the labs next month. Fingers crossed till next month.

Wish me luck.

Do tend to jump up and down a bit. Nothing to worry about unless huge shift upwards

Sona_akb
Sona_akb
in reply to Gioielli

🙏🏻🙏🏻🙏🏻

It is common for levels to fluctuate. I was diagnosed 10 years ago and up to a few months ago I had never been below 200. Don’t lease get overly concerned about Covid 19 affecting you any worse than a healthy person. It does not attack the liver. My daughter has just had it (she’s 45) and got through it fine. Take care and keep isolated. Xxx

Sona_akb
Sona_akb
in reply to Gioielli

I don’t panic about corona, I’m quarantined in home more than 30 days. So boring ...

We’ve spent the Persian New Year alone in home. So sad...

Hi Sona_akb, I think mild fluctuations like this are quite normal. Try not to worry.

May I ask you what was the ALP number when you were diagnosed? Was it 265? And were you experiencing any symptoms like itching or fatigue when you were diagnosed?

Hi😘 thank you for your response.

I was diagnosed 20 months ago. I don’t have any symptoms up to now. It was just a routine screening.

Glad to hear that you don't have any symptoms now. How is your ALP now? It's been 3 months since your posted this and have you done another blood test yet?

I’m such badly stressed when going to do tests. I don’t know why I am like this. My Hep said if you feel like uncomfortable , can do it 6 month later. I’m now waiting until next appointment and trying my best in diet , exercise and relaxation. Wish this works well for me

Try to relax a little, dear. Stress is not a good thing for us. I always remember I was told that someone in the PBC foundation lived to age 103 and died not because of PBC. I guess positive thinking is important for us.

By the way, how do you choose your diet?

Thank you for your lovely recommends❤️❤️ My hep said no salt at all. I also try to eat healthy, low carb low fat diet. Much more veggies. I give myself one cheat day in month.

One thing that I want to add and didn’t started yet is beetroot smoothie or juice which is so beneficial for lover. Preparation is a bit difficult but I will try to do

No salt at all ? That's really hard. I was expecting low salt. Isn't salt a necessity for us humans? Anyway, I'm googling about Gluten-free diet and AIP diet.

Yes it’s hard and I think unbelievable 😂😂 what about delicious steaks??

But I’m trying to reduce to the least amount of salt.

I’m a bit familiar with these kind of diets because my mom had lupus and the same diet was advised to her. So we all had low salt diet in home to be aside of her

I never know for sure if GF diet and AIP diet actually works.

I think following healthy diet low salt low carb and meat is the best to obey.

And everyone is saying to cut out diary, but I can do without milk. I’m now trying to replace with coconut milk but the taste is not my favorite

Why cut out diary? Is it because of the fat in the milk?

I don’t know exactly why 😂😂😂 But yes I think because of fat. And also I have heard about being harmful for autoimmune disease. I will search more about it.

I am still using cheese and yoghurt.

I will google it too. Stay strong, best wishes!

Thank you dear Johndoe. Let me know if you discovered about it.

Take care🙏🏻

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