Results results and results

[Biddyb]

Hi all it would be really great if you guys could post your ALT and ALP results for us to compare

[Brummi]

Knowing other people's readings would be of no use to me, so why should I want to know them.... ?

[Biddyb in reply to Brummi]

It would be helpful for me which is why I asked as my consultant seems to think mine are so high I need a biopsy to confirm AIH overlap, it was only a request not an order Brummi

[Hidden]

It's hard to compare mine because my gi lowered my prednisone to soon. My alt last Wednesday was in the 700 range and my alp was 243. Tomorrow I'm having more blood work and can give you another reading. I was almost at a normal range before he lowered. Now I'm taking 40mg of prednisone a day. And in Friday if all goes well I'm supposed to start azathioprine to try the remission. I don't know what I'm going to do. I don't like what I'm reading about any of this medication. I think I'm going to just pass it all up and give myself to my god to deal with me the way he feels I should be dealt with. I didn't sleep last night. I have to take 40mgs of prednisone this morning. Plus Im having my coffee. Oh well. Time for the jitters

[Biddyb in reply to Hidden]

I tried Azathiaprine which made me Ill for weeks, if i get the result from my second opinion consultant if I have AIH overlap they will try and convince me that immunosuppressant is the way forward which like you I am not happy with and will try natural products and do a lot of praying I will refuse to be immuno suppressed.

[Biddyb in reply to Hidden]

Are you in the States as I understand that the liver readings are different from the UK yours are certainly twice as high as mine. Mine are rising since stopping Steroids

[Hidden in reply to Biddyb]

My alt will drop as fast as it will raise. Yes I'm in Florida. When I took prednisone before the biopsy my alt and ast was almost where they should be or getting close. Why are you unwilling to take immune supressent? I'm concerned. I was up all night reading and researching

[Biddyb in reply to Hidden]

Just think that killing off your immune system is a bad thing leaves you open to all kinds of ailments and more risk of cancer, I lost all my family to cancer so don't want to increase my chances. As you say there is so much to research it is a mine field and as previous bloggers have posted we are all different and must make our own decisions and hope they are right. Would rather try natural products than drugs where possible but that's another mine field

[Ktltel in reply to Hidden]

Don't give up. Time and unforeseen occurrence befalls us all. They will monitor you closely on your intro in to these new drugs. Ask a lot of questions along the way.... Keep a simple journal of how you feel etc. Never give up, never surrender. 💪👊❤

[cfsummerford72]

Hello,

I am new to this thread. However, not so new to liver complications. I have had elevated liver enzymes and lipase since 2012 after having gastric bypass. I complained of upper abdominal pain radiating through my back. No one ever looked into it until recently in Feb. of 2017 I was at work doubled over in pain. Supposedly due to a combination of Aleve and amoxicillin for a tooth ache given by a dentist set everything into motion. I went to ER, they drew blood work came in and say did you know you have Hepatitis? I said no a test was ran years back and it showed negative. From there, I go to a new PCP because I had moved and hadn't setup a new doctor. I explained to her my history and symptoms. She ran a smooth muscle test, which came back positive. So I left her office in shock with, ok I have AIH. What now? She refers me to a liver specialist at MUSC in South Carolina. I have more blood work done there. He calls me on a Sunday. I'm thinking great what doctor calls someone on a Sunday. He informs me that he has diagnosed me with PBC and has scheduled a liver biopsy soon. Fast forward, yesterday liver biopsy was preformed. FYI< that shit hurts like nobody's business. I compare it to a cracked rib pain (especially if no pain meds are given) So today I find you guys, and I'm like what's next? I've read and read info on treatment (not happy with options) prednisone and immunosuppressant drugs do so much harm and puts you at risk for other illness. I am trying to leave a normal life work provide for myself and my son. Everyday I struggle with fatigue and itchiness all over. I would love to hear the pro's and con's. Is this a death sentence? I am still in shock and trying to absorb this without breaking down.

thanks,

Connie

[Ktltel in reply to cfsummerford72]

First, it is NOT a death sentence. Many of us have been where you are. It is a new normal for sure. But, OK, you can switch gears some and focus on getting used to the new stuff going on with you. Knowledge is power and as I have found out, it's also a great place to calm down. Especially when talking to others on here who have walked in your shoes. Ask questions, be patient for your answers.... they will come. There are a wonderful group of people on this forum. They care and are ready to share what they know. Hang tight. Don't let nerves make things worse. Someone said those words to me not too long ago. ❤ You will he saying them to someone else new to AI disease soon.

We care, someone who knows more will answer your questions soon.

Stella

[cfsummerford72 in reply to Ktltel]

Thank you for replying it means so much to me to hear from someone who has been here. I cant explain these feels to people around me that dont have a clue. To them I could have said I have a cold. Their response is how long will this last? Which at that point I stare at them. Like this is not a cold its not going away. Somedays I will look and feel like a million bucks then somedays it takes all ive got in me to function must less pretend im good. May I ask did you do treatment? Im scared I had diabetes I was over weight. Im afraid prednisone will put me back as diabetic. Insulin shots, blurry vision. The the immune suppressant lord know what problems that will throw on a body. So many questions and I know I dont have the answers.

I do thank you for sending support.

[Ktltel in reply to cfsummerford72]

Hi again, I can only share with you about the meds for PBC. It's called Ursodiol. For very many of us it's very effective and one can be expected to live a semi-normal life. And some on here have lived 15 plus years with this disease. That's depending on what stage of PBC you're in. Further testing and your biopsy should give you that info. Still, Ursodiol/URSO has proved to he very helpful in slowing down the progression of the disease. Eating very low sodium, super low fat, and a few other restrictions that many others will share with you will help you too. Keep a simple journal of your symptoms, blood levels (liver enzymes) as you have them done. Just for your personal reference and to track progress. 👍

[Biddyb in reply to cfsummerford72]

I take Ursofalk which seems the general drug for PBC luckily I get no side affects I took Prednisone for a couple of years which helped but of course put on weight and got a moon face but weaned off them and finished them in January this year. Hope you have a good consultant that you can ask questions and get answers list your queries and go through them with your consultant. Hope this helps. Good luck

[4pjx__ in reply to Ktltel]

I'm late to this thread. Fairly newly diagnosed. Thanks forrreminding me it isn't a death sentence. I've been thinking today that it is. Still freaking out. Only every other day and not every day now. So maybe I am improving. 😉

-Pam

[Biddyb in reply to cfsummerford72]

You are in a bad place this is not a death sentence it is something that you will need to have a PMA about try and do a little on the days when the fatigue hits it is hard but try and fight it even if you walk around the house a few times, no one will understand how you feel which is now helped by this link you have joined, read through some of the posts and you will feel that you are not on your own and maybe pick up a few tips along your journey. Good luck and keep posting. Someone will always lift you.

[cfsummerford72 in reply to Biddyb]

Thank you for giving support. I do feel I am in a bad place at rhis time. I feel like Ive lost my old life. I do have to work a full time job to support myself. So in reality Im going through the motions luke everything is fine because no one can understand what I am exactly dealing with. I have not been put on meds yet but i hope something helps with the body pain, stomach swelling and the fatigue. Again thank you. I am glad I found this group. To know that someone hears what I say and understands me.

[saurini]

I was diagnosed last week with PBC. I've had 4 sets of lab work this year - all ALK PHOS results ranged from 349 to 467. My ALT values ranged from 102-134.

[Ktltel]

Stella/ktltel

Dx 10/10/16 early stage

4/16 tests results:

Alt/normal

Alp/141

[butterflyEi]

Hi Biddyb

I am sorry to say to you that it is not a good idea to make comparisons for blood test results with PBC. I know of recent mine have been good but beforehand not so good.

PBC readings can vary from day to day and also is dependant upon the ratio used at any particular laboratory and country so the recommended wisdom is to make a diary note of your readings over a period of time so that you can make comparison for yourself or your own readings. For many of us we have other auto immune diseases which can impact on us.

If you are new to this and need some medical input contact the PBC Foundation, free to join through the logo above, you will find they have a help line on their web site and if no one can answer your question they can refer it to qualified medical personnel and get back to you.

I know this will be frustrating to get a "non" reply but I do hope you will find it gives you some information.

best wishes

[teddybear7]

Hi can't help you cause i never know mine, i suppose i could have them if i asked but it's not an automatic thing here so i don't bother. If they're good he tells me if they're bad he tells me I just follow his lead & don't dwell on numbers. I'd be quite happy to have a biopsy if he thought it was necessary, equally i wouldn't push for one if he thought not. I suppose you could say i have a lot of faith in my Dr. It's really not an issue. X

[Biddyb in reply to teddybear7]

Maybe I have been mislead by my consultants they seem to make a big issue out of my levels suppose some look at things in a different way. They make it a big issue

[Angel_b in reply to Biddyb]

hi biddyb

please don't feel your being misled. That's great your consultants are doing everything they can. I think its just that blood tests are so complex. I'm new to this too and trying to learn - but the one thing I've realised is that there is no definite path for pbc and everyone's case is different. There is so much more to the blood tests than just the lft ones.

I think its hard to get used to the unknown. Normally - at least for me I've gone to doctor and they can say what the problem is and they can advise what it is and how long it will take etc. But with this its a guessing game. Best we can do is live as healthy as possible and remain positive.

best wishes.

[teddybear7 in reply to Biddyb]

I'm not saying the levels aren't important they most certainly are. However i have never been told what they are only if they're good at the time of checking or bad. Or if they're up or down not what the actual numbers are.

[claygi]

1. Had been mildly AMA positive since June 2016 (1:20). With ALK PHOS of 128, ALT of 73, AST of 64. All those LFT numbers had been elevated for two years prior. They thought I had AIH overlap, but no positive ANA. Positive for fatty liver disease.

2. Then officially diagnosed in February 2017 with positive AMA (1,280). Still no positive ANA. ALK PHOS 127, ALT 88, and AST 74. Still fatty liver.

3. Last blood work in March showed progress with LFTs. Please note, I had been on Lipitor for 4 weeks for fatty liver and Ursodiol for 3 weeks when blood was drawn. ALK PHOS 99, ALT 69, and AST 52. Fatty liver gone as shown on liver ultrasound.

I hope this helps in some way. I've never had a liver biopsy and may not depending on next blood results , to rule out AIH overlap.

[Belgium22]

PBC. 8 month on Urso. Alt-40, Ast- 31, Alp-155, Ggt- 85.

Before urso: Alt-115, Ast-90, Alp-300-400. Ggt- 450.

[Biddyb in reply to Belgium22]

Brilliant results for you. Good responder to Urso, bet you are really happy with the results. Nice to read. Did you change anything else diet wise or is it just down to the Urso?

[Belgium22 in reply to Biddyb]

Thanks. I didn t change anything, i always had a healthy life style. The only thing that i dont take any alcohol now( was not a big drinker before), but according to my doctor, i actually allowed to have 2 glasses of wine per week.