Just diagnosed and scared.: Two years ago I... - PBC Foundation

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Just diagnosed and scared.

Two years ago I was diagnosed with Lupus because of symptoms and positive ANA. Last month I decided to get a second opinion because I felt as though my Rheumatologist was cold and wasn't helping. My new rheumy ran a series of tests and found that my liver enzymes were very high and I was again had a positive ANA so she asked me to have more bloodwork to test for antimitochondrial antibody. She called me a week later saying that I am highly positive for PBC, refered me to a Hepatologist and said that she believes I never had Lupus. Instead she thinks I had this all along. I'm 42 and afraid. Please tell me what I can expect.

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Oh, don’t be scared. I am also 42 and have had the disease for over 10 years. Find the right doctor and right treatment and carry on with life. Have you had the symptoms of itching and fatigue? Those are the worst I think. Otherwise life has ups and downs and other issues but you shouldn’t be scared. Best wishes to you! You are not alone here. 🙂

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Thank you! I do suffer extreme fatigue. I'm a teacher and sometimes I don't know how I'm going to make it. I can barely get out of bed most days. I pray I'm in the early stages.

You give me hope!

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Join the pbc foundation & read the literature on pbc to get familiar with the condition. Based on what you read, write down questions you have & bring them with you to hepatologist’s appointment so he/she can answer your questions.

Hepatologist will probably do some in depth blood work & see if you need a biopsy if it is not clear if you have pbc or another liver condition.

If you are diagnosed with pbc, doctor will put you on urso to slow the progression of the condition. Doctor will probably send you for bone density scans, sonograms, & possibly fibroscan.

Hope this helps.

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Thank you for the information.

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You can't be highly positive, no matter what titre the anti mitochondrial antibody level is. My titre is the highest that there is, and it doesn't necessarily correspond with disease activity which is reassuring.

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I think the doctor means a high titer being highly probable for pbc, rather than a comment on progression itself.

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Welcome to the world of PBCer's...Each one of us has faced the day of diagnosis. Scary??? you better believe it. However, there is hope. Some of us have been dealing with this for minutes, others of us for decades. Some of us can tolerate the medications, some of us cannot. The common theme is that we all are doing the best we can each and everyday. One of the best things to do is to attempt staying calm...stress just makes everything worse. I started with a G.I. and did not see Liver Specialist (hepatologist) for 20 years. I am one of the folks that cannot tolerate the medications, so I have turned to clean diet and naturopathic medicine for my course of treatment. I practice yoga and meditate to calm myself down and to lift my spirits. I have been dealing with this since the 1990's and my numbers have always been high, but scans are normal. Diagnosed with a biopsy to rule out all other suspected issues. So, the good news is that you found a place where you can gain a tons of knowledge, but more so, some of the most compassionate support ever. As you get used to this forum, you will find you can search any issue you can think of, contact different folks via the chat area, or just post and make comments. Most folks here are pleasant and understanding. Most will share their truth and personal experiences. I have made some amazing friends here...you are definitely not alone and never have to be again.....Be well

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Thank you so much! Your kind words are greatly appreciated. I keep reading on the web that PBC is morbid and that nothing really helps. You have calmed me down. I hope that I have a similar outcome. Bless you!

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My pleasure...keep us posted on how you are doing. I'm here to help you anyway I can

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Hello I was around 40 when my symptoms started and diagnosed at around 42 I was scared worried about how I would be and how long I would live I worried would I see my children grow up.That was 13 years ago I have symptoms fatigue being by far the worst and my liver is damaged but I have responded to the medicine urso.Now I live with the disease it has effected how I live my life but I am having the best life I can, I have other autoimmune diseases so it's not PBC alone for me.It is hard and such a shock at first but it does get easier to live with with time.find a good doctor you like and take things slowly and be kind to yourself while you adjust to this.Jane

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Hi,

First of all, good for you getting that second opinion. It's so important to advocate for ourselves. And it's understandable to feel overwhelmed right now..

We've all been there in some form or the other.

As you are new to the diagnosis-- stay away from a lot of outdated Internet information about PBC. Here is a fantastic resource from the PBC Foundation for learning facts about diagnosis and treatment management of the disease. I urge you to download it and use it!

pbcfoundation.org.uk/upload...

It's especially helpful regarding questions and info to discuss with the dr.

Give yourself time to adjust. Lean on us for support. We are here. We care. We get it.

Hugs to you

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Thank you so much!

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Dear Sandb26,

You are going to be just fine! My journey started out with suspicion of Lupus and autoimmune hepatitis and ended with the diagnosis of PBC. You will connect with a hepatologist and probably start Urso medication. You are very smart for getting a second opinion and you will continue to be smart and research and be your own advocate. The fatigue for me was almost overwhelming but I changed my diet to lightenen the load on my liver and the fatigue got better so pay attention to how you feel with different foods. Keep listening to your body and being smart. Way to be brave and get the second opinion. Hang in there and keep reading and asking questions. Best of luck to you!

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I really appreciate your kind words. I've been reading so much on this site that I now feel a lot better. I'm so glad I became a part of this group!

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