Anyone out there have this disease?
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YES!!!! Me for one of the small percentage. You are NOT alone. I have had it for 15 years along with various and sundry other conditions. I was so thrilled to discover this site after 15 years wandering around alone in ‘terminal bafflement’ (an Irish expression I love)!
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How are you feeling? Have you had any symptoms? I always wonder what to expect next. Love that “terminal bafflement”!
Actually, I feel pretty much the same. I was asymptomic when I was diagnosed and I have remained that way, pretty much. My skin is dry. I have eczema, and I can’t wash my hair daily. I need to get
regular pedicures and put gobs of Vaseline on my feet because they are so dry and cracked.. I have some problems with fatigue–although I am not sure how much this is due to PBC or my other problems. Perhaps because I have other major problems I compare between the impact of the 2 conditions which is may not fair-particularly to people who have only PBC. But for me PCB has had much less impact on my life than my ‘head problems’. My liver function tests are the same NOW (1/3 abnormal) than when I was diagnosed in 1997. I was diagnosed early and started Urso soon after (in a clinical trial). I use lots of lotion, don’t wash my hair daily, stay out of the sun, and allow myself to rest when I feel like it. I have noticed that I don’t have any ‘elasticity’.by which I mean, when I am tired or hungry I did to do so NOW not at some later.. more convenient time. And I am always drinking water–and I never used to drink many fluids at all before.
Although the physical impact of PCB has been minimal for me, psychologically it has been a far more challenging and complex process. Including a chronic illness (PCB) into into my sense of self; self concept, feelings of self-worth. and even worldview as well as my view of myself has been ongoing and every-evolving. PCB is different from other chronic illnesses (e.g, breast cancer) and it is almost un-American because there is no cure, requires daily medications, and is a rare disorder but not exotic/exciting. People hear cirrohsis and assume alchoholism–and everything in that can of worms about character/self-control issues. In the early days of my diagnosis I felt people judged me and treated me differently..that I am not ‘healthy’. The psychological challenge is very real and significant because I had a chronic illness and their ignorance but well-meaning remarks made it more difficult. There is the American expression: ‘If you have your health, you everything.’ But what if you don’t have your health, then what? The biggest challenge now is getting my head around the fact of ‘I have a chronic illness’ even though no one can tell by my appearance or behavior.
I sleep more than I did when I was younger–and I used to go 150 mph the queen of multitasking. It was psychologically challenging to accept the ‘new me’ but this is an ongoing process defined by the PCB. I have been on disability since the diagnosis and this has been a big loss. I would like to continue working but know this is a challenge. I hope you are able to hear the good stuff in my story: that despite a gloomy prognosis, I am no where near that initial negative prognosis.The challenge is giving yourself permission to do to take care of myself. So my advise would be: 1) take care of yourself and do whatever you need to do that; 2) don’t focus on a negative future because you probably won’t have it; and 3) enjoy your life and don’t define yourself –or let anyone else define you– by your PCB. Blessings for a good 2011.
Thanks for your candidness. I have only been diagnosed for 1 year. I am on Ursodiol and my numbers so far are perfect. I thought that was a great thing but my doctor told me that even though my numbers are good…it still can damage my liver. The thing that gets me is the minute something is wrong with me, or I ‘m sick I immediately wonder if it’s my LIVER. I’ve been trying to read everything I can about it…you just wonder what to expect all the time. It’s unnerving. I am hoping that at 56 I’ll have THIS liver for the rest of my life! So I am hoping for the best! Thanks for the pep talk. Happy holidays…and a healthy New Year
Yes I have it also. I have had some type of mctd for several years and a couple years ago I started getting frequent bronchitis. Turns out I have interstitial lun disease. After my last ANA which is specled patteren 1:320 titer we did an AMA which came back positive 1:80. My liver biopsy came back yesterday and I have PBC 🙁 My concern is my liver actually really hurts! 6 Months ago i came home from work and dod an hour or 2 on my treadmill almost everyday and now I can do nothing without causing great pain for myself. I understand noe the connective tissue disease ILD and PBC can all go hand in hand but geez what next? I am also having quite a bit of pain in my chest lately. Not heart attack kind of pain but it hurts, what is that ll about? I see the pulmonollogist tomorrow for my lungs and then liver Dr again next week and when that gets straight I go back on my auto immune meds. I feel so exhausted mostly in the mornings I have to often sit on the shower floor and wait for energy to rinse my hair. Im only 45 🙁 This is just so much all at once.
This will sound cliche..but it is so important to have a positive outlook. When I was
First diagnosed I was scared and depressed. That effected my whole outlook on life. It helped that I had a dear friend who has multiple sclerosis, another auto immune disease. She occasionally has periods where she cannot walk, see well, and gets very fatigued. It put everything in perspective. I asked her how she kept her positive attitude..her reply was “how can I not?” today I can walk! She does everything to keep herself healthy. I am now doing the same. My whole attitude has changed. I no longer focus on why me? What’s next? I say I’m ok today! I am tired, I get sick frequently (colds, etc) but I am better off than many. When I feel fatigued I chalk it up to “getting older!” take a nap and keep going. I know it’s hard. It will get better! Hang in there
Hi Carolp ~ Yes i too have PBC satge 3 . i was first diagnosed in April of 2010 and started Urso then i was end stage 1 early stage 2 , done great for two years then became jaundice and levels went up my Gi referred me to Mayo finally . i went to Mayo in Aug and was told i was falling into a group of people the urso just stops working for and that in the next 2-5 years ( depending on how it progresses ) well here i am 8 months later and im jaundice levels higher than when i went to Mayo and now they are checking for liver cancer , i amalso having some swelling in feet , lower legs and liver area as well as liver pain . dont know whats in store just keep saying my prayers ! its important to try to stay positive and keep the faith , its hard because bless us all we all have our bad days .
TB was reading replies and noticed you have eczema and dry skin , i too have eczema and the dry skin that comes with PBC was pretty bad for me and i tried numerouse things then for a gift my son and his friend went to bath and body works ad bought me body butter and ~ wow ! what a god send it has helped tremendously its the only thing i use now and my hubby and kids make sure i always have some 🙂 . dont know where you are located but if you can get some its sure worth the try .
Thanks for this tip. I certainly will head right to Bath and Body works! Hope all is well with you. How very kind and thoughtful of you to post this –and of your family to be so creative and determined. Glad you are thriving.
This is such an odd disease…you never know, when, why, or how it’s going to hit. Every time I go to the doctor I ask, how do I know, or when will the ursodiol stop working? There is no answer…so it kind of puts you in limbo…so I know how you feel about you don’t know what’s in store for you. I can only say try not to worry, that never helps…I wish you health! I’m here…if you need to talk. Chin up
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