PBC Foundation

Positive AMA

Hi, I went to a rheumatologist because my primary sent me for pain in my hands. He had ordered labs, but through the patient portal, I saw nothing mentioning this lab. The rheumatologist said there was little he could do for osteoarthritis and told me to come as needed. As soon as I got out of the parking lot, his nurse called and said they got a copy of the labs, and I was positive for AMA. She wanted me to go to my primary who is in the town I live and have more labs drawn. What does this all mean? Do I have cirrhosis? Or possibly lupus?

more labs drawn.

Has anyone been through this, and what does it mean? I know I could have cirrhosis but not sure if this means I have it.

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Gatorlin...I had positive AMA & elevated ALP. Did they explain AMA? It is Antimitochondrial Antibodies. The elevated ALP combined with AMA was red flag for PBC. I have PBC with duct scarring. . It is not Cirrhosis. Only your dr will be able to diagnose you completely. I’m not certain which test would reveal lupus. I would think the rheumatologist would be the one to check that. You will be okay. Not everyone with positive AMA has PBC. Try not panic until you can get explanations from your dr. 😊

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Thanks so much for the quick reply. Yes, I know what AMA stands for, but it is all new to me. Even though I am a retired nurse, I had never heard of it until now. Hope it isn’t too serious.

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I bet you will be okay. Pls let us know. ❣️

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I will, and thanks!

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Its scary when you hear word ama do you live in usa they do biopsy there here in ireland they do fibroscan instead do you have symptoms mine was picked up on routine blood test i am asyptomatic

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They do biopsies, as you said. I am waiting for the doctors office to open back up from the holidays. They will be drawing labs for AMA2.

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Some drs here in the US prefer fibroscan vs biopsy. I’m sure some drs think biopsy is the only way to go. I’m glad mine doesn’t think that way, unless deemed necessary. Mine will repeat fibroscan one year to check progress.

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You have to be tested I was I just got my test results no lupus lime but my inflammatory markers are high also my bun is high which never was my vitamin D very low they put me on some medication my AST Alp Alt are really high since last tested in Sept I have biopsy next wed it gets tiring I'm tired and my bones hurt

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Yes, I guess I wasn’t clear. I understand they find lupus through testing, I just didn’t know which lab they do for it. You will feel some better once vit d is back to normal. Hope all goes well with the biopsy.

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I'll tell ya it's starting to effect me my bones are so sore from head to toe I'm so tired all of a sudden I feel like I'm declining it's weird but that's how I feel

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I have Fibromyalgia so I already have the sore muscles and bones. I hope I test negative for the next labs coming up.

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Because your have positive antibodies, it’s an indication that you could have Lupus. I sure hope it’s negative for Lupus.

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Hopefully you had the ANA Cascade test. It covers many autoimmune diseases. Mine indicated slight chance of schleroderma.

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It’s one of the labs being collected when I have it done on Monday.

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Gatorlin...I looked back at my ANA Cascade. I had to research couple tests on that one. Mind boggling sometimes 😊

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Yes, it can be mind boggling!

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I’m sorry to hear you are in pain. Hopefully your doc can give you something for it. I guess they do the testing in steps, dependent on what your blood work shows. Good luck!

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Thank you

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I have positive ama early stages of pbc elevated alp why do you think you have cirrhosis i had fibroscan and have mild fibrosis i am on urso you need to get more tests done and dont stress too much and dont google

Good luck

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I don’t think I have cirrhosis but just concerned it could turn into it.

I am trying not to worry about it.

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The treatments nowadays are very successful i have met people who have this disease for over 15 years and they dont have cirrhosis i have joined a support group try to find a support group wherever you live and you will find it very beneficial

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I would love a support group but live too far away from the nearest larger city. That is why I joined here. Thanks for your advice. I should know more next week when the labs are drawn.

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Good luck

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Thanks!

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Online support groups do not mind where you’re from.

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I will certainly be interested after my labs are drawn.

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If you get diagnosed with PBC, I would join PBC Angels on Facebook. I get a lot of info from there and it doesn't hurt to join more groups. I have learned so much in just a month and feel so much better about the future. Good luck to you!!

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I joined Primary Biliary Cholangitis FB group...linked with Liver Foundation. Great group. The lady who heads up the fb group is in Mississippi. Wonderful lady.

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It's not the PBC it's other things that get effected that's what is happening to me I know staying positive is the way to go but let's not lose site of the fact it's an incurable disease I wasn't worried up until now I'm not feeling good at all my biopsy is this coming week

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I’m certain the next labs will be a liver profile, IF my AMA2 is positive. Just taking it one step at a time.

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MJK98. You will be fine. I know how you feel. I was a nervous wreck about my biopsy even after I had both my GI & my hepatologist explain the entire process to me.

The anticipation is worse than the actual procedure & the waiting in recovery before they release you. I had it done in a hospital.

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Google is worst thing to do it's a mind blank

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Well, since I’ve been a nurse (retired), I always do my research. That is why I understand what could be positive, and why.

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Research is a good thing. We have to be our own advocate. I have always researched & always will. You just have to be very selective what you choose to read.

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You’re right. Don’t go to just any site. Choose one that has a medical background. Knowledge helps, prevents you from being scared, if you understand what is going on.

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I agree👍

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Try not to worry too much at this point. Many people are found to test positive for AMA but never go on to have pbc. There are also different variants of AMA and it also depends on which one it is. They all relate to different conditions. Pbc is AMA -m2 and most people would have elevated liver enzymes as well, usually alk phos.

Good luck with the further tests.

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I am concerned but not too worried until I have the other labs drawn. I certainly do not want positive results, but am prepared to deal with it.

Thank you, Angel!

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I felt the same but i was relieved it was diagnosed early and i am taking urso

Think the fact you are retired nurse you would be more aware

Talking to others on this site who have pbc a long time and managing it has given me great comfort

I was very depressed and anxious for the first two months but i havent thought about it since

I am trying to keep to a healthy diet

No alcohol keep active and take meds

Thats all we can do

I dont google pbc

I am grateful i am asymptomatic as others on this site have symptoms such as fatigue and itching

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Ballymahon2, I was a nurse for 23 years but that doesn’t mean I understand everything about a positive AMA. Its not the usual lab that is tested on an everyday basis. You would have to work side by side with a physician to be exposed to the information. Being a nurse, however, helps you understand the possibilities.

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Being a nurse also helps you understand the different blood tests its only now i have had to learn about alp ggt etc i left that to the doctors before my diagnosis

Now i feel i need to know more about the importance Of elevated lfts

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Some say don’t use Google, but I think it’s helpful. A doctor rarely spends his time with explanations. You can always ask, and if his opinion matters to you, as I’m sure it does, then I would not hesitate to write down your questions and ask each one.

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Definitely i agree

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My husband came to me tonight complaining of pain in both his hands. He never complains about anything, so I knew it was bad. It is probably arthritis or osteoarthritis as it is so very cold here. I gave him one of my curcumin capsules and in a very short time, he said it can't work that quick can it? The pain was already gone. I said why not, it's for inflammation and that's what caused your pain. I use it whenever I have the URQ pain and it does stop the pain.

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Is that a subscription or over the counter

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Not a prescription, but my doctor approves. I buy BioMor Curcumin capsules over the internet. I like the purity and that it does not have Pepperine. Google Curcumin and check out the different products. Some brands are needlessly expensive.

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Thank you I will check it out

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Hi, I received the order for my local physician to draw labs. I am going to be tested for AMA2, as well as for Lupus. Looks like it’s going to be Monday to get them done. Not sure how long it will take to get the results back, but hopefully a few days.

Thanks everyone for your support. I’ll let you know when I know.

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You should also get tested for lime rule that out

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I was thinking that also. Thanks

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The antimitochondrial antibodies (AMA) produced in the blood of primary biliary cirrhosis (PBC) sufferers allows doctors to test for PBC. PBC is a chronic disease with common symptoms such as fatigue, itching, and jaundice. If you are diagnosed with PBC, that doesn't mean you have Cirrhosis. I've had PBC close to thirty years, but I don't have Cirrhosis. I have also never had Ursodiol and I'm presently asymptomatic.

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Are you not taking anything else for pbc? How are your LFT's, alk phos & bilirubin levels?

You must have a very mild case if you had it for 30 years & are asymptomatic. How do your doctors monitor your progression? Just curious.

Thx

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nycgirl2012: I had been itching for nearly three years when I was finally dx in 1991 via liver biopsy, I was told I would be dead in 5 to 10 years. I sent my path report to a specialist in another city and he said they had never seen such an early stage pbc and I would not die from pbc, but rather with pbc. My PCP helped me devise a regime of vitamins and milk thistle and he continued to monitor my LFTs for years. He always said my liver tests were within normal limits. I decided I needed a colonoscopy and found another specialist. We got along great until I told him I had discovered a PBC support group on the internet and they were being prescribed URSO. I asked him about it and he said don't pay any attention to that internet, so I walked out on him. I didn't have another liver doctor until I was hit with Autoimmune Hepatitis in 2011. He is one of the three doctors that had given me the death sentence twenty years earlier, but since I had AIH and he had performed the biopsy, it was either use him or go to another city, so I stuck with him. He did a very good job in managing my AIH and has always given me good reports until last summer. My blood tests were getting bad and he had ordered a CT scan. He said my liver and spleen are enlarged and my spleen is taking my platelets. About that time I was beginning to have itching, bouts of nausea, stomach ache and URQ pain. I figured it was do something or die, so I began to research, changed my way of eating and began my supplements. My G.I. retired at the end of September and my new PCP has taken on the job of monitoring all my tests. She said if we ever need a liver doctor, we'll call one. On October 21st, all of my blood tests were absolutely wonderful, even my cholesterol which has never been good. My CPAP doctor even noticed I have gotten my platelets back up and he said you're doing great!

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Wow...what an amazing story! Good for you on taking charge & managing your condition despite the challenges presented by the very doctors that should have help you. Sorry you had to go through all that.

I think many doctors are not modest or humble enough to admit that they don't know enough & dismiss what patients tell them. They should at least listen & do some research to explore the possibilities.

I am glad you now have a PCP that is compassionate & understanding.

Here's to an outstanding & healthy 2018 for all of us!

Cheers!!! 🥂

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So happy to hear after your journey, that you are doing well! Thanks for sharing your story!

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I forgot you asked about my Hepatic tests. My AlkPhos was 97, AST 27, ALT 17, Total Bili 0.3. Also, Platelets from 113 up to 130, and they had been down to 81 in April. Cholesterol 197 down from 206, Glucose 101, down from 120. I kind of slacked off during the holidays, so I'm hoping they're still good when I go for tests in Feb.

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These are excellent results. If you don't mind sharing, would be curious to know your diet & vitamin regiment. Also how were you able to come up with all of this?

You are amazing! 👍🏻😊

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Hello everyone, just giving a follow up. The labs my Rheumatologist ordered came back ok. I don’t have the specifics, but he sent a letter to my primary, and I have an appointment tomorrow. I think this is great news, just want to consult with him. Thanks for all the support and I’ll probably add an update after I see him.

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Wonderful!

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Thank you!

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Ok that is great news! Exhale now.. phew.

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That is exactly what I did!

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Wonderful👍

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Thanks hon!

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