Do i have PBC??

[Mikaela2]

Last week I was at a reaumatologist because I hade problems with neck and joint pain for years. My blodtests show pos ANA ang gp210. My reaumatologist doesnt think it's important because my lever function tests are normal. When I starter reading about PBC I realised I had all the symptoms .. Itching on arms and legs for years , tired , pain in the abdomen ! Now I am so scared ! Has anyone been in my situation with pos ANA and gp 210?

[Alishav2003]

Take a nice deep breath... I was diagnosed with PBC 6 years ago, I've had symptoms for a very long time I.e. Itchy skin, constant ache in upper right stomach, dry eyes etc.. I also have Hashimoto & demyelination of brain. My older sister has RA and no PBC. Try to relax and see if you can make appointment with a Gastroenterologist just to have more testing. It will all fall into place you just need to hear more then one Doctor's findings and go from there. 🌺

[Mikaela2 in reply to Alishav2003]

Thank you so much for your quick reply! I am trying as good as I can to handle this thing .... It's difficult ..

[Alishav2003 in reply to Mikaela2]

I understand why you would feel that way. It is very scary when you are given info that shakes your world. For me the same thing happened then I just started reading about PBC but also getting different medical option. Today my liver is stable but my AMA is off the charts and my symptoms are very hard to bear some days but I am learning to live one day at a time. Thank goodness we have these support discussions. Take care

[Hidden in reply to Alishav2003]

What do you mean when that your AMA is off the charts ?

I have been told that a positive AMA M2 is a positive. That it doesn't matter how high or low the number is

[Alishav2003 in reply to Hidden]

I can't answer your question for I am not a MD. I do have PBC. I understand your panic but you will have a better understanding of your diagnosis when you see specialists. It has definitely helped me take charge of my body & disease. Best wishes keep us all posted

[Mikaela2]

Take care !!

[jane1964]

Hello Michaela I think you definitely need to ask your general practitioner to refer you to a hepatologist for their opinion.I hope you don't have pbc but you need to find out definitely one way or another as if you do have pbc the sooner treatment and monitoring starts the better and with early treatment many patients have very good prognosis now

.A rheumatologist isn't really the right doctor to decide. I have pbc in fact in my case a rheumatologist found the antibodies and sent me to a hepatologist, I also had symptoms itching hands and feet and terrible fatigue, my liver function tests were normal for the next 5 years but they diagnosed me with pbc because of antibodies and symptoms, the hepatologist was correct eventually my liver function tests became abnormal.Good luck Jane.

[JaneIng in reply to jane1964]

Hi Jane, I assume you are on medicine now. If so, I am curious when did they start you with the medicine? Is it when your liver enzyme went out of the range?

Did your AMA M2 going up as well?

Thanks,

Jane

[jane1964 in reply to JaneIng]

Hello yes I as diagnosed around 7 years ago because the symptoms of fatigue and itching at that time liver function tests were normal.My doctor monitored me every 6months,after about 5 years they went abnormal and I started urso initially it worked but over last year alp has risen although it's still not that high but above when it should be .I was diagnosed with cirrhosis a few months ago after an ultrasound.I hope to try the new medicine oclavia soon, and hopefully it will help.The doctor has never retested the AMA.

[Mikaela2 in reply to jane1964]

Hi Jane! Did you get a liver biopsi when you were diagnosed? Although liver enzymes were normal?

[JaneIng in reply to Mikaela2]

The doctor asked if I want to do biopsy and I said no because I don't deal with anesthesia well and I don't heal well. The microscopic gallbladder surgery 4 years ago caused me Hypertrophic scars and it still hurts. I also heard the biopsy is not very accurate, depending on where they get the sample. Another reason, given my age, I would not qualify for liver transplant by the time I need it, nor do I want to do it. So all I hope for is to delay the progress by good diet and/or medication.

So far my liver enzymes are high normal. I do monitor that every 3 month. I also monitor pancreatic enzyme amylase and lipase.

I am not on medication yet.

I hope all is well with you and best luck in your quest.

--Jane

[jane1964 in reply to Mikaela2]

Hello Michaela,no doctor didn't do a biopsy so I don't think I would have met official diagnosis criteria but the consultant was very experienced in pbc and my symptoms were very clear terrible fatigue and itching hand and feet, he seemed certain but he didn't prescribe urso until the blood tests went abnormal just monitored me every six months.He did at he didn't want to do a biopsy unless he had to as it wouldn't change the treatment.The important thing is to be looked after by a hepatologist with experience in pbc even if they just monitor you.Jane

[JaneIng in reply to jane1964]

Thanks Jane.

I think I am in the similar boat as your situation 7 years ago. High AMA M2, normal liver enzyme but I do have elevated pancreatic enzyme as well. My GGT, ANA, IGG, IGM are negative. So far no meds for me yet. Just monitor. Symptom wise, I have fatigue, muscle/joint pains, itchy hands, indigestion. Going gluten free, dairy free, sugar free diet do help but it's still there.

I hope you find a solution soon.

Best wishes,

Jane

[jane1964 in reply to JaneIng]

Thank you I was glad in a way to know what was causing my symptoms.Best wishes Jane

[Mikaela2]

Thanks Jane !!

[Skypony]

Hi Mikaela2, I'm not medically trained, but I have read that there is an association between gp210 and PBC so yes, see a hepatologist as other posters have said. But there's no need to be scared; your LFTs are normal at the moment, and that's great news!

If you do get diagnosed with PBC by a hepatologist, they are likely to suggest that you take Urso, which I believe often reduces the level of gp210, so that's good news too. A hepatologist may be able to prescribe something to help with your itching (a symptom which you can also have with other liver conditions by the way) so it's not necessarily a bad thing to have a diagnosis. It can lead to improvements.

Remember there are lots of us with PBC who lead long, happy lives, and if you do become one of our tribe, you will get lots of encouragement and support here! Let us know how you get on. Best wishes

[Michiganpbc]

See a hepatologist which is a liver doctor not a GI doctor, the liver doctor will test you for a PBC with a blood test called AMA and liver scan and maybe a biopsy this will tell if you have PBC, let us know how you are doing good luck.

[Mikaela2 in reply to Michiganpbc]

I am almost 100% sure I have it ... I will go to a leverspecialist ! I thought that maybe somebody here had similar story with same antibodies to share .. Thank you all for your answers and your wishes!!!!

[Michiganpbc in reply to Mikaela2]

Good luck let us know!

[Becca75]

A doctor would be the best person to tell you that ...