Texas, Diagnosed 2012, Stage 2/3
I would’ve never imagined, going into an urgent care clinic for a migraine headache, would end with PBC diagnosis. My story begins in September of 2012, after waking up with a severe migraine headache. I drove myself to our local urgent care for treatment. After, some blood work and pain shot, I was sent home feeling much better and not knowing, this would be the beginning of a long journey and an outcome of PBC. diagnosis.
I still remember message left in voice mail, the day after the urgent care visit when the nurse communicated that my liver enzymes and SED rate were high, and doctor wanted to see me ASAP. Being so naive of medical terms and never having any medical issues, I wasn’t concerned. During my visit, doctor advised my liver enzymes and SED rate were HIGH, and I was being referred to neurologist who would be better at treating my migraines and instructed to discontinue medication until further instructed by the neurologist . This was September of 2012 from that time on forward I would be sent to the neurologist, gastroenterologist, hepatologist, MRI, catscan, spinal tap, poked many times for blood work, and finally liver biopsy. Then, after liver biopsy, and still await second opinion confirmation that was sent to the Mayo Clinic, I finally had a diagnosis, PBC.
At that moment not being educated on the disease “panic” is the first emotion that runs through your body and then you pull it together and realize you can’t let it win. My journey has been both good and bad and now being educated on PBC, panic and stress are hardly emotions that I have. I hold onto all the good and remain positive.
What I can say is living with PBC is not easy and people don’t “get it” what I hate the most are these three words, “you look good” ..these three words I hear often. But what they don’t know are the struggles of living with Primary Biliary Cholangitis. That I have now become a non-responder to URSO and Ocaliva, which are the only two medications available at this point. That, I await the progression of cirrhosis. That, I pray for a miracle, and that, I pray that someone will find a cure. That, someone famous gets diagnosed in order to get public awareness. That, I pray for funding to help with research before it’s too late for me and many others who also suffer with the disease.
While I’m waiting, PBC is in control, my immune system is weak, have severe liver pain caused by the inflammation, constant fatigue, severe itching, swelling, brain fog, but I continue to fight like a warrior. During this battle, I welcomed two other auto immune disease to join the fight. I now battle PBC, Hashimotos disease and Rheumatoid Arthritis.
I stay strong and continue to fight, not only for my loving and supportive husband, but also for my pride and joy, 18year old son. He is my biggest advocate and constantly watching what I eat, drink and making sure I follow all doctors orders. Without family, friends, good doctors, PBC friends, this disease will beat you. So let’s work together to find a cure.
Texas, Diagnosed Oct 1999, stage 2
It started in the spring of 1999. I began itching all over; from the bottom of my feet to my shoulders. It was unlike any itch I ever experienced. I scratched so much, my skin was raw.
Was it an allergy or an allergic reaction? Was it a skin condition? I started with a dermatologist. After 2 visits I realized it was a waste. He told me I had scabies and had to wash all my clothes and bed sheets with a certain detergent. He prescribed an awful smelling ointment I had to put all over my body at nighttime. I didn’t do back.
Next I saw an allergist. He did a multitude of allergy tests and everything was negative. He decided I was allergic to my cat. No, I was not. He then said it was stress and maybe I should talk to a professional. No, it was not stress.
Lucky for me, I was sent for blood work. My liver enzymes were through the roof. With lab reports in hand, I went to see an internist. He read the reports, examined my horrible, scarred skin.
He called a gastroenterologist and set up an appt for the next day. More exams, more blood work and a biopsy.
Finally, a diagnosis: Stage 2, Primary Biliary Cirrhosis. No cure; just treatment. I was told: no alcohol, no tobacco and no recreational drugs.
I left his office convinced he had the wrong chart and I did not have this disease. I was up most of the night reading up on this condition.
Yes, I had fatigue
Yes, I had jaundice
Yes, I had pruritis
I was immediately given Urodiol. A Bone Density test showed I had Osteopenia and was given Fosamax.
Today, I am still in stage 2. I have NAFLD and my ALK has been elevating over the last few months.
I am still on URSO 1,250 mg daily and have been receiving Prolia shots.
I pray for a cure
IN, Diagnosed 2005, Stage 4
My story starts as many others. My Mother and I had never heard of PBC, she had elevated liver profiles and her family doctor was watching them and since they stayed the same he didn’t react I didn’t follow up she had been going to the doctor herself and I was taking what the Doctor had said to her as everything was ok. We were so wrong Mom had a CT-scan and was diagnosed with an enlarged spleen and was to referred to a Gastroenterologist, she was so smart and knew about PBC and treated her the best she could sadly enough she passed away a year and a half later, we saw the ugly side of PBC, I have to include that in my story because my Mom having PBC saved my life.
My individual story starts as many others again, a routine physical a year and a half later showed elevated cholesterol, which brought on the liver panel numbers and I was then referred to the same Gastroenterologist. I still see her, she is my rock. I was diagnosed as stage 3. I was referred to IU medical Center and again was seen by a Hepatologist top in his field. I lost him as a doctor last year because he transferred to Stanford to be the Medical Director of Hepatology there. I was fortunate to be given a hepatologist that specializes is auto Immune liver diseases. So fortunate I have always had a great medical team, it is so important.
I have been so fortunate, being scared when I was first diagnosed and to be diagnosed at stage three and by then I was reading everything I could get my hands on, I was fortunate to find the PBCers Website and very fortunate I went to a conference shortly after being diagnosed. It was life changing. Life does go on and I met so many like me.
I diagnosed with Hepatpathic Encelopathy in 2009 and a little ascites so begun Lasix and Xifaxan (the wonder drug) and with Provigil that kept me working. Three years ago I stopped working the HE, fatigue and muscle joint pain was too much. I was also then diagnosed with Fibromyalgia. This opened up a whole new world of retirement.
I have been so fortunate all the things that you think you’re going to miss out on has happened, I have been blessed I have gotten to see our Daughter and Son both happily married. Our Daughter and Son-in-law have blessed us with a granddaughter and grandson and our son and his wife will bless us with a granddaughter in August. I have been fortunate my husband has been very supportive.
Life goes on my advice is to reduce stress (that one took me a while) and find a doctor you can work with. This is a long term relationship. Listen to your Doctor. Don’t abuse your body, take care of it. I have don’t much better than what was expected. I was told over two years ago I would be ready for a transplant. It’s not my time yet, but when it is I am ready. I trust that things will work out and I’ll get some of this energy back and my head will not be so foggy, and I can throw away the lactoluse. But until then, I am going to enjoy the little things in life at a little slower pace, the things I missed when I was always in a hurry. Life goes on…….One day at a time.
Mary Ann M.
SD, Diagnosed 2017
My name is Mary Ann Marko. I am 75 years old and diagnosed just this past May with PBC. I was shocked as I had never even heard of the disease.
I went to my primary physician following a severe gastro intestinal episode in February. Elevated liver enzymes were noticed at that time. Thinking it might be due to my recent illness, a blood test was scheduled for a month later. The enzymes then were even higher. A couple of more tests were done to differentiate the possible causes as well as an ultrasound of the liver was done. The scan was normal. I was then referred to a hepatologist who diagnosed my disorder. He also looked back on my records and saw that I have had elevated enzymes since 2012 that were never brought to my attention and apparently not noted by my doctors. Although I did not seek medical attention for symptoms, I can see looking back that I have had several. Around December of last year, I started having intense itching of my scalp, also itching along the lash line and inner corners of my eyes. I have had leg and muscle cramps and very cold feet. I also had waves of nausea and several episodes of wooziness, and I developed little white waxy balls on my face.
After the diagnosis, the heptologist prescribed Ursodiol 500mg three times a day. My second shock came at the cost of the medicine. My 50% co-pay for a three month supply with my drug plan was $537.00. I must find a cheaper source. I would be glad if anyone knows of one. I have been taking Ursodiol for a little less than a month and seem to be tolerating it OK.
I am scheduled for a follow up appointment and a fibroscan of the liver in three months.
I am still adjusting to this news that came out of the blue, and glad to have this site to communicate with others who for no reason other than bad luck have been diagnosed with this rare liver disorder.