My PBC story...

[Tj2929783]

Hi everyone… I am new and thought I would introduce myself. I have been reading the posts on this website for a few weeks. I find that it is very helpful to learn about others that have PBC, what their symptoms are and how they are coping. It is reassuring to know that I am not alone. I thought I would share my story in hopes that it can help someone as well. I find this disease to be a great burden and life changer. Sharing it will also help me a great deal by getting it off my chest.

I am 45 years old and I was diagnosed with PBC about 5 weeks ago and am now being treated with URSO 250 x4 tablets (taken in the AM). My symptoms for this disease go back at least 11 years when they did an emergency surgery to remove my gall bladder. Although I had no history of gall bladder trouble (no stones, pain, could eat anything), one night I consistently vomited and was rushed to the hospital. An ultra sound showed my gall bladder was inflamed and swollen. The doctors were afraid I was going to get liver damage, so they removed my gall bladder. Ever since then I had issues. I had pain under my right ribs; I could not eat the foods I used to eat. I couldn’t handle alcohol past 2 drinks without feeling massively ill. My LFT’s were going higher each year. The doctors said that they didn’t know what my problem was and chalked it up to Acid Reflux. The meds for that never helped. I even saw a gastroenterologist and he looked at my test results and diagnosed me with a fatty liver and told me to go on a diet. He never did any additional testing or even an ultrasound to make that diagnosis. I drove 7 hours round trip for that appointment. Feeling frustrated and that this was my own fault because I was overweight, I just put up with the symptoms that followed over the years…thyroid disorder, fatigue, aches, pains, etc. Then this past year I lost 60lbs without trying. I just couldn’t digest food without an incredible amount of pain. Other symptoms were showing up, like Raynaud’s Phenomenon, Xanthomas disorder, itching, thinning hair, hyperpigmentation on hands, lighter coloured stool, darker urine, bruising, etc. I started to see a new doctor. I went in and just said I feel terrible and I need a full physical. She did the regular blood tests and they LFT’s were very high (sorry I don’t have the numbers handy). She looked on the computer to see what the blood tests were over the last several years for a comparison. She was shocked that no one had investigated this further. She did blood tests until I thought I was going to have to drag my arm out of the lab. The AMA test came back positive. Over 900 was the count. I am eternally grateful to her for diagnosing me. Now I hope to get the help I need. Incidentally, this doctor said that I probably never needed to have my gall bladder out. She thinks that PBC was manifesting itself back then.

I find that I am going to have to allow my life to change. This is very hard for me. I love my job. I work full time with a food company in the health care sector. It gives me great pleasure to help other people who are sick or older and need specialty foods and tube feeds. I also run a cattle ranch with my husband. So in essence I have two full time jobs. It is hard for me to just take it easy. But my body is not giving me a choice. I realize now that I used to just run on adrenaline. Sometimes I wonder how this could happen to me. I am sure I am not alone in that department. From what I have read many of you feel the same.

Thanks for reading my story. I welcome words of encouragement. And if I can help any of you, please let me know. ~ TJ

[NotorDJP]

Welcome TJ, your story sounds a little like mine. I had my gall bladder removed in 2004, but mine had stopped functioning. My only symptoms were pain on the right side over the liver and diarrhead after eating. They did a HIDA scan and mine was functioning at like 9%. So it was removed. To be honest, I haven't been the same after that, but really goes as far back as when I had mono in my 20s. I've had the fatigue that long and it really only got better off and on.

My ALP was rising steadily over the last 5 years, perhaps longer, that is when I started noticing. Nobody seemed to worry too much about it until this year I went to the ER for an unrelated issue and the doctor there said, wow your liver ALP is high. I went to a follow up to a nurse practioner and she did the GGT test, which nobody seemed to have worried about doing. It was like 553 with normal being 35. I then was scheduled for AMA test and it was positive, then a biopsy, which showed me PBC stage 2.

I work at a branch manager in a bank, so I know how stress, even in a job you like, can take it out of you. I just thought the past few years I was getting older, I was out of shape (my doctor told me to lose weight too), and I just needed to exercise and try to deal with my stress. All along I was probably dealing with an inflamed struggling liver. It makes me angry that nobody paid attention to me a few years back when I might have been diagnosed at stage 0 or 1.

I am just learning what I can and cannot do as well. I went to a rheumotologist today to get tested for other underlying disease, though he is pretty confident my only major issue is the PBC.

Just be prepared for people to not understand how you feel. Overall, we PBCers look pretty well, even those in later stages, so its hard to explain to people that either haven't ever been sick, or those with other chronic diseases that losing a little weight and working out wont' make us feel better, that we didn't do this to our liver, and yes we really are tired. (I have been overweight, mildly now, obese before and I have very little fat in my liver)

Welcome. This is a great place and you will get lots of support here.

[Tj2929783 in reply to NotorDJP]

Sorry I replied incorrectly. Now I am in the right string...

Thanks NotorDJP! I appreciate your response and your story. It does help to know that I am not alone. It's funny, I get compliments on the weight that I lost and people ask me how I've done it. I just say that I have been on some crazy diet. Nobody is the wiser. However, everytime someone says something to me, I just want to cry. Losing weight because of an illness is not all that it's cracked up to be.

I am so sorry to hear you are in stage 2. It must be rough. It's a shame that after being sick for so long that we finally get validity for what we have been going through with a diagnosis like this. I truly hope everything works out for you.

Can I ask you, did they do a biopsy automatically after being diagnosed? Did another test spur that on, like an ultra sound? I ask because I requested my doctor do a biospy and he said there was no need as I have been diagnosed already. He said he wants to see how I am on URSO for the first three months prior to doing anything else.

[NotorDJP]

I am not entirely upset with stage 2 as it could have been worse. As far as the biopsy it is the standard progression in the US for diagnosis. I had an ultrasound early on that showed no tumors ir blockages so they ruled out cancer. If you ate in the uk they generally dont biopsy. My mom had this disease too and she was losing weight too when she went on urso. She began to gain weight back. Did they say PBC was causing the weight loss?

[Tj2929783 in reply to NotorDJP]

Yeah the weight loss is due to not being able to digest food. So I just eat tiny amounts every few hours. I have read that is a symptom with PBC. However, the doctor said if it hasn't improved after 3 months of URSO, he would do a scope in the GI tract and see if there was something else going on. Thanks for the info! Take care!

[NotorDJP in reply to Tj2929783]

Welcome! If you take antacids you may not be getting enough in your stomach to process the food too. I eat smaller meals too or I pay for it later with liver pain.

[Donna1974]

Hi TJ

Must have been so frustrating for you to feel so unwell and not know why. I remember getting my diagnosis nearly 5 years ago [I've just turned 40] and I was so scared. But I've learnt with eating the food that works for me [ I can't tolerate gluten, chilli or really fatty foods], doing regular exercise, taking a liver herb [I'm in Australia and buy one from naturopath Sandra Cabot], taking urso [i'm on the same dose] and trying to stress less that you can really manage the disease and so far my only symptom is fatigue [but who knows if that's just life] and occasional liver pain if my diet falls off the rails [sometimes I just want to break all the rules]. Good luck with everything. donna

[Tj2929783 in reply to Donna1974]

Thanks Donna! You too!

[Calogia]

I'm so glad you finally found out. I went through the same thing. My PCP for 25 years thought my liver enzymes were from taking Tyleno P.M. I kept going back for the same symptoms you had and refused to take no for an anwer. She said the only other thing I can suggest is a GI. When I went to the GI she saw my liver enzyme count and went through the roof. She immediately had me get a bipsy and I was Stage 4. After complaning to my primary for 5 years. My primary called me after the GI called her and was in tears. I get an ultrasound every 3 months and a MRI every 6 months. So far it hasn't progressed to cancer but cirrhosis is there and nodules.

More than anything else is how much I trusted my doctor. Never let them say it's nothing when you have so many symptoms, ask for a second opinion.

It is nice to know you're not crazy even if it means you have a disease!

Callye

[NotorDJP in reply to Calogia]

oh my, that is a terrible story! doctors are people and aren't infallible, but if I had been diagnosed at stage 4 because a doctor kept patting me on the head my husband would have done something violent. He was already mad at the stage 2 diagnosis I got. I hope you are as well as can be. Have they listed you for transplant? Sounds like that doc should pay for it.

[Calogia in reply to NotorDJP]

No as long as i haven't deveoped the end stage symptoms they aren't going there yet. I was really angry with her for a long time but I can't go back.

[Tj2929783 in reply to Calogia]

Oh my! I am so sorry to hear that you are in Stage 4. I have a hard time trusting the medical professionals, I can't imagine how you feel. Thanks for sharing and please take care!

[ranrace]

My (OLD) doctor missed the whole liver thing also. One would think they would look into the 2nd largest organ a bit closer when showing all the signs of liver problems. I had the itchy skin, fatigue, pain under the ribs and dry mouth-eyes. Stress they said.........

Make sure you take the pills with food. 1000MG of "acid" without food I would assume is hard on other things in the GI track.

Randy

[Tj2929783 in reply to ranrace]

Yeah I take with some yogurt and then a couple hours later I eat a piece of toast. That seems to be working okay. Once I took the pills without food and was very nauseated. I know better now! Thanks!

[NotorDJP]

I take mine with food, and I take mine twice a day, not all at once

[Calogia]

I also take mine twice a day, less stress on the somach.

[JennerLayne]

I feel for those of you who waited (and waited and waited) for a DX. In 2007, I too felt tired and experienced digestive issues (which worsened from earlier years) and saw a Gastro who ran a CT. Because my blood was whacky and I had lots of enlarged abdominal lymph nodes, I was immediately sent to a cancer center where I stayed under 'watch and wait' for three years with possible lymphoma. After exhaustive and repeated CT scans and referrals to 2 Rheumys, a dermatologist, ENT specialist (esophogeal issues) to rule out other diseases, my nodes continued to enlarge (by then probably reactive from 8-10 CTs and a PET scan which makes me CRINGE!) and my insurance called off the expensive search. I took a break from doctors from '10-'13 because I was tired of living through all the 'what ifs' and the visits again started with a Neuro insisting I see a Rheumy who referred me to the Gastro that conducted the AMA test on the first visit. I often wonder how it was missed by many, and though I adore my Oncologist who investigated lots of things, it's weighing heavily on my mind to follow up with him on behalf of future patients who may have a similar plight. I think we all have to be advocates, even if it sometimes means educating our own doctors (and previous ones as well).

[Tj2929783 in reply to JennerLayne]

Hi JennerLayne,

Thanks for sharing your story! It is very frustrating when you look back at everything that we have gone through and realize that it could have been diagnosed with one blood test. Don't be shy about telling the Oncologist what your final diagnosis is. If he is really a good guy, then he will be grateful that you told him. If isn't grateful, well then at least you know you have done your part.

[Karaliz]

How amazingly different our stories are. I'm so sorry for the delays you experienced. The GP I saw diagnosed me 11 years ago on the strength of 1 set of deranged LFTs. She rang me the day she received the results to rule out alcohol, drugs & illness: no to all of the above, asked me to come in and said I think you have a rare autoimmune liver disease called PBC. Once she was sure through positive AMA>640 she referred me to a specialist. Although AI diseases can be rare, they are not unheard of & there is a real need to think outside the box. Wishing you all the very best from Down Under!

[Tj2929783 in reply to Karaliz]

Hi Karaliz, I am glad that you had a doctor on the ball. Thanks for your well wishes. You take care too!

[Clairjames]

Hi I was diagnosed with pbc in April 2013 and I'm also 45

After many years of complaining I wasn't well they sent me to a blood specialist who after 3 months and many bloods found out I had pbc

I felt my world was falling apart the werse thing for me is the tiredness and aches

I'm also on ursofalk 3 time a day x

[Tj2929783 in reply to Clairjames]

Hi Clair, I truly feel for you. For the first time on this website with this group of people I finally feel like I'm not alone. Thanks for sharing your story. Take care!

[bink]

Hi there Tj ~ no my friend you are not alone in this crazy world of PBC I was seeing my primary doctor for being so exhausted ( i told her i felt like i couldn't even take my next breathe ) i just assumed my vitamins or maybe iron was low and i was a very busy on the go woman and mother to 2 boys and a house full of kids constantly so she ordered blood test and they came back showing my liver function test were elevated but said she wanted to keep an eye on them so i trusted her and for the next year forced my self to live life and go go go finally i said this is getting worse ! and she agreed to send me to my Gastro. Doctor . He did his own set of labs along with ultra sounds and a few other tests and when the other test ~ for fatty liver , hep , or liver cancer all came back clear but the blood work showed liver test high he ordered a biopsy and yep PBC stage2 , he started me on Urso right away and i felt better but he still referred to Mayo Clinic , they said i wasn't to the point of needing a transplant just yet it would most likely be in the next 5 years continue Urso and they would stay in contact with my Gastro. Doctor and also my Primary . Well i done great for 2 years then became jaundice and was feeling terrible and totally exhausted so my Gastro Doctor did another Biopsy and it came back stage 4 ~ i was then sent to Mayo yet again . i met with doctors and they drew labs and ran some other tests ( 5 days ) said i have fallen into a group of people that the Urso stops working for so i was scheduled for a return trip of 21 days of testing and my case put before the transplant team and i was accepted and listed on Oct. 24th , 2013 ~ still awaiting my miracle and hanging in there . And you are so so right this has been so life changing ~ i learned not to fight what your body is saying , i was determined not to stop my everyday living and take naps ! they were silly naps were for children ... well i do take naps ! lol so hang in there and listen to your body and take it slow . wishing you the best .

[Tj2929783 in reply to bink]

Hi Bink,

Sorry I am just responding to you now. I was having some computer issues. Thanks for sharing your story! I am so sorry to hear that you are in stage 4 waiting for a transplant. I hope it comes soon and you will get some relief. Please keep me posted as to how things are going for you. Please take care! PS - I love the pic of your dog. ~TJ

[Hidden]

Hi ,I can only imagine what you are going through.

My mother recently passed away in Kings College after years of suffering from pbc.For many years my mom was not diagnosed properly and told all sorts of different things before the doctors found out it was pbc.Her health deteriorated so much after years to a point she needed a liver transplant and that was about 6 years ago.The transplant was successful and her life was much better but inly for a few years in which the symptoms came back and she went in to proprietary Liver transplant list again 4 months ago but one did not come in time.

My mother was so lovely and it never have happened to a nicer person.She made friends with everyone she knew and will be missed until the day I see her again in heaven.Even though there was a ot of pain and suffering I will never forget her smiles and laughs along the way.

I wish you all the best for your future.

I know there is a pbc foundation where you can talk to others .I have heard story's of pbc sufferers whose health has improved and they have led healthy lives.

All the best

[Tj2929783 in reply to Hidden]

Hi Ryan,

I’m so sorry to hear about your Mom. She sounds like she was a lovely person and I’m sure was very lucky to have you. Yes, PBC can be an awful disease and all that it brings. I hope that a cure can be found someday so that others no longer have to suffer.

Please take care!

TJ