PBC Foundation
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Life expectancy with PBC

I don’t want to panic anyone but yesterday when applying for travel insurance I Googled PBC and came across the following on Medicinenet.com in answer to how long one might expect to live with PBC. (This wasn’t a question on the form but the cruise travel specialists we were attempting to get a quote from didn’t recognise/list this disease so I was attempting to see if there was another name it might be known by -fyi, there wasn’t!):

“Advances in treatment have extended the life expectancy in the past many years. The average survival expectancy after diagnosis for a patient with PBC who is asymptomatic is 16 years while that of a patient with symptoms is 7.5 years”

Now I don’t know when this was written but, having been diagnosed in 2008 (& being currently asymptomatic) this suggests I have 6 years left but, should I suddenly develop symptoms my time might be up!!

However, I could have had PBC for years before I was diagnosed, so I might already be dead according to this article....

The point I’m trying to make (apart from keeping away from Google) is, what is this article based on?

Is there actually any data to support it that I’ve been living in ignorance of or is it just another ill-informed opinion about PBC?

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I have met women who have pbc for over 20 years and are still going strong

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Actually some travel inx companies do list PBC and when I tick it I’m automatically refused cover. Other companies are better informed and when PBC is ticked they then ask if I have any symptoms (which I don’t) and then I can get cover but the prices do vary and I always have to shop around and even when I’ve got a good deal with a company one year it doesn’t necessarily follow that they’re competitive the next.

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If you need travel insurance they don't list pbc but it comes under liver disease, then they ask if you got inflammation, fibrosis or chirrosis of the liver. I have no problem with travel insurance and I have fibrosis. And as for the life expectancy that article is really out of date. Xx

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What is the name of your insurance company please

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Hi there

I use different once all the time . Normally go on medical travel insurance compare site and then just pick the reasonably price one from there. Hope this helps.

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I have had PBC for 30 years and still doing ok. It is known not everyone with PBC follows the same path, we are difcerent how PBC effects us. As long as your doctor is keeping an eye on you, you will be ok.

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Hi I’ve had PBC in my 16 th year now, but was ill with pains in the bones and stomach few years before I was diagnosed,

Wishing you well x

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How unfortunate that when ill informed articles are published they are never removed from the web. I presented in 1996 with symptoms finally diagnosed because of something else in 2006. So I guess that makes it about 22 years for me.

The PBC Foundation know of a woman of over 100. Who died with PBC not because of it.

The name change from cirrhosis to cholangitis reflects the improvement in diagnosis by the medical profession giving those of us with PBC a better outcome.

Unfortunate that other professions are so reluctant to keep up with the changes.

Hope you manage to get a good dea l.

Best wishes

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I have had PBC diagnosed for 18 years and they think a few years before hand. I have suffered symptoms such as severe muscular and joint pain and fatigue, brain fog and stomach pains and am still going. Don't go by the numbers go by how you feel and don't panic.😊

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hello.I saw that article and i couldnt sleep that night.I am 35 now and i have symthoms.(prurit sometimes)That article refers at the average rate calculated after more trials.Example 1000 persons with pbc in 16 years: x:lived ., x:died/transplant, x with smt and x without simthoms.

We , as individuals are reacting different in face of the disease .

i hope that we will live more than the studies

best regards

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were they looking under primary biliary cirrhosis or cholangitus... sometimes the cholangitus doesn't show up...

i was diagnosed 19years ago and had a transplant last year... i had symptoms 30....v.mild 30years ago but didn't know what it was...

this site... medi etc appears to be completely inaccurate.. which as you say is worrying.

perhaps pass this info onto Robert at the pbc foundation to see if he can do anything...!!!

best cazer.

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Wingding,

Life expectancy is longer with ursodyoxycholine is what I understand. But every time I go online to google life expectancy with PBC, I get 75. According to google, ifve got 15 years before I hit life expectancy. I think with no PBC life expectancy for USA is 80.

I tried to get extended care insurance but was denied due to PBC. That was my financial advisor checking for me 2 years ago. I’m saving for a liver transplant($500,000) not only in case medicare doesn’t cover it but also to pay for home health care if I become disabled. I don’t want to be in a nursing home. I’m going to try again now to see if I can get extended care insurance. If anyone has extended care insurance please tell us your company.

Jlruggie

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Good luck! X

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Hi, I’ve just read your post about life expectancy, I felt angry that these sites or some of them don’t inform themselves of the facts about pbc. I’d just use proper sites, attached to proper medical bodies. You get to know them attached to universities, proper study groups. I just looked up that medicinenet they definitely need putting straight. I’ve been diagnosed 18 years, transplanted after 10 years, I’m sure there tons of us. Please read some good studies to counter that rubbish. Take care.

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Wingding,

Living with an auto immune disorder put me in a panic too. I realized other diagnoses are worse. I also realized I’m a resilient intelligent person. I’m constantly researching optimal diet and lifestyle to maintain optimal health and longevity. Social interaction and checking in with someone who keeps track of you and cares about you comes above all other factors according to TED talks presenter. Then comes diet, exercise and stress. I won’t even mention what cigarettes, alcohol, sedentary lifestyle and poor nutrition do to life expectancy. There’s also colonoscopy test, that will make or break how long you’ve got too.

Most recently I’m studying about how atomic nuclear bomb companies have sold their byproduct, Floride to governments. They have said floride is “good” for teeth. There is zero research to claim that floride is “good” for teeth. There is research to state floride causes autoimmune disorders, damage to organs, especially liver and kidney. There is research to prove floride causes neurological damage, even in small daily doses, particularly Alzheimer’s disease. There is reasearch to prove dentists will not be permitted to practice dentistry if they don’t support fluoridated water and give toothpaste with floride in it. I challenge anyone to research fluoridation without being named as paranoid and insane by university administrations and our governments. It won’t happen and you will not be permitted to bring your research to the public.

Please comment on my post.

Jlruggie

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My doc says normal life expectancy if the meds work and enzymes are under control, i am asymptomatic currently and only 35 yrs old.

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Nice to see so many of us on here this morning. I appreciate the strong, intelligent group of men and women who take time to share their experiences here. Two points were made in your writing. The first, regarding travel insurance. I travel and never was ask anything about my health. I live in USA and as long as I have current insurance here, the travel company is good with that. GeoBlue is the company. Someone mentioned long term care insurance. I was a medical social worker for many years. Lots of people with pre-existing conditions are covered. But the truth is, if you are fairly young, the premium will be low. I'd

check further before giving up. Also, I know that insurance companies pay for home health care, but it is limited and based upon qualifying events. 24 hour care is really pricey.

Now..the whole life expectancy thing is why I really decided to chime in today. I am one of those here who is 20+ since diagnosis when PBC was first suspected, The literature then stated 2-20 years. Well, I'm not buying it. There are far too many of us who are exceeding that range with little symptoms. There are far too many factors involved to reach such a far fetched conclusion. Did those people eat well, did they have other issues, multiple medical problems? I just know that for me, statistics are just averages...live your life each day with grace and dignity. Chances are far greater to be hit by a bus than die from this.

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Thank you so much for your input from your own experience. That lifted my spirit like you can’t believe. I was diagnosed last year and since then I see death at every corner :(. I try not to, but it’s hard.

I live in the US too, so I’m happy to know that we can have a decent coverage if we need to

🙏🏻❤️🌹🙏🏻

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My pleasure...I have found so much comfort in this fabulous forum. It's a shame it took this dread disease to bring us all together. the Universe works in ways i will never understand, so i have learned to just go with the flow. I can remember seeing "death at any corner" in the very beginning. I ended up in counseling for awhile to talk to someone other than family. I actually sold all my worldly possessions and moved to Kauai to live out my days, as I was convinced I had less than 2 two to live. Well, I'm back from that journey and living in AZ...21 years later, still here, still teaching yoga, still smiling. Be gentle with your soul and stay close to us

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Wow, I’m speechless 😲, but in a good way 😊. Your awesome positive attitude is an inspiration. When I first saw the title of this post, I said to myself, life expectancy; this can’t be good... Not reading it, but then I also said to myself, no I will read it and I’ll try not to let it get to me. Well, I’m happy I did read it because there is so much hope here and so much authentic positivity from everyone’s own experience as well as wisdom, and for that I’m really thankful 🙏🏻😊🌺🙏🏻

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Glad you are here with us. I believe we could rule the world, right! Look for the blessing of each moment...they add up to awesome days.

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They definitely do 😊😊

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I have been told by every doctor that most people die with PBC, not because of it. One of the really unfortunate things with this kind of information out there is it creates a tremendous amount of anxiety and stress, which is the worst thing possible to take years off your life. According to the Cleveland clinic up to 32 years .

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PBC for 26 years..only just turned to cirhossis three years ago and was given a life expectancy then of 10-12 years dependent on my liver scoring...have had varise bleeds and slight water retention in stomach but my prognosis seems almost the same.. I didnt have Urso for the first 15 years as it wasnt offered back in the early 90,s and I then lived overseas some for 7 years and not given there ....when I started it here I felt quite sick but persevered and its fine now....my blood counts are a lot better. I suspect with the introduction of Urso the disease will not take too much hold. All the best

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just joined this site. tysm for setting record straight, cuz i saw that post on life expectancy as well!!. I was diagnosed 5 yrs ago with AMA, but a normal liver biopsy result. the gastroenterologist said I prolly wouldnt see any symptoms for 10 yrs, but come back in a year or two. that was it- no meds, said no treatment needed at this time. well i lost his card, they never called me back, and I let it go, until lately I had to change to a new Primary care dr, who is an internist. he did CBC, my alk phos came up high ( as it had before) so he did bone scan, ( have osteoarthritis-i knew about earlier) , and did ultrasound of liver. well I just saw him few days ago, results back on ultrsound. it was not normal. he rattled off results, but all I caught was some type abnormality, and now hes ordered Mrsp, then says see you in 3 months! I told him I have pain and swelling on right side- he pushed on it- I yelled in pain. he knows I have alot symptons, rash, pain, arthritis, aches and pains, and this right side pain hurts, and I get "see you in 3 months", with no meds to start!? why not start on meds?? why wasnt I taking them fo r last 5 yrs? now I have symptoms and some type blockage or nodule creating pain, and still no meds prescribed? I dont understand, and Im 61..Id like to see my granbabies grow up, and really worried at this point how long Im going to have. I dont think I stand a chance at liver transplant at 68 yrs old,, i iwould think younger patients at top of list, as they should be..i dont know what think anymore. medical profession not my fav. Im just thankful to find this site. sorry for the venting. I have no one else that I can talk to that will understand my worry., glad to hear 7.5 yrs is not correct though.

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I have probably (symptoms wise) had pbc- aproximately 30 years. Still going strong! The current meds definitely help. That report is way out of date!

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Not sure how long you have been diagnosed but I was diagnosed one year ago. My ALP came down to normal range & have stayed there. Bilirubin normal as well. So my thought was, if levels are normal then there should be no progression. I found that isn’t necessarily true. I was early 2 fibrosis when diagnosed. Last fibroscan shows early 3. So now my dr says fibroscan not totally reliable, which we all know. Now we’re on a venture to find out why I progressed. It’s all one big maze.

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Hi gwillistexus,

I was diagnosed december 2016. So just about the same. I realised then that I'd had the symptoms (including severe itch with skin tearing), upper left quadrant pain, dizziness, hair loss, in my thirties and even earlier. Thought it was tiredness, stress etc. I am glad you seem to have an attentive doc. Yes its the problem too there seems no real predictable pathway. We are all different, with recognisable symptoms. Do you see a heptologist? Is medication helping or has that changed in its effect? While I explored getting a heptologist, and my gastroentologist has offered to refer me on, I have decided to wait and see if the condition progresses first. While I am grateful the services are there, I do find I have got to ,perhaps a temporary luxury point; of wanting to reduce regular medical interventions in my life. I have a bloods check every 6 months or so. I take Urso and Calci D and sertraline 50mg, (originaly prescribed some years before PBC), now it definitely calms the itch. I consider that I am fortunate when I read of other experiences here. I know no one else personally who has this condition so my only contact on level of discussion is here.

As you say things can change but how reliable is diagnostic scanning? I have had "inconclusive scans". Tis a maze alright.

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Anne29... I have been with a very good GI since diagnosis. I was allergic to Urso capsules so he put me on Ocaliva. I think he is stumped now because Ocaliva is apparently the only other choice drug. He wants me to meet with a hepatologist & see if he/she has a different path of treatment, which I greatly appreciate before fibrosis gets out of control. So I am waiting for an appointment. I have hepatic panel every 3 months & CMP every 6. I so badly want an MR Elastography but there are none available in my city. Closest is in Dallas, and I’m willing to go there but need Dr to schedule.

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I see . Your path has been less clear and I think more problematic than mine so far... I really hope you get that appointment soon, and that it throws some much needed light on matters. Get in contact with the GI if the waiting goes on too long...meantime it possibly helps to keep a diary of your health. You do sound like you are keeping up to date for your own records. Also helps to keep questions in mind for the heptologist when you meet up for the consultation. Gwillistexus, I hope you can manage to keep anxiety at bay as you wait. Its easier said than done at times!

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Not sure what you mean by less clear & more problematic. The only thing Dr is questioning is 1) fibroscan & 2) is Ocaliva working. I have everything in place for hep. I have something for anxiety but I choose to not take it. I’m perfectly calm 😊

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Ah sorry bad choice of words here. I just understood that you had unresolved questions around meds. I am glad too that you are able to stay calm. I am a lot more so now than I was. This week I have had daily dizziness and discomfort. Also feeling tired more often & not having the energy to be as active as I usually am. I have to admit the thing that worries me is if the Urso becomes less effective, and whither Ocaliva is a) available or b) effective for me. Or the pbc becomes possible psc as it seems it still might. So yes I am calm too, but thats when the worry creeps in for me. I don't really follow any dietry restrictions, I eat healthily but also sin with sweet things, the odd fry , probably too much dairy (love cheese....).Still, I know we're all different.The advice from my gastro (who seems fine generally) was that I could eat whatever I want -just keep taking the Urso. What's your thoughts on this?

Anyway, please excuse my misinterpretation of your previous entry, and good luck with the appointment.

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Oh no problem. I just wasn’t sure what you were thinking. Yes, I’m greatly concerned about Ocaliva. When I was allergic to Urso capsules, I really hoped my dr would switch to tablets, but he said no. So yes, I’m concerned about what I do from this point. My dr didn’t say follow strict diet but said watch bad fats, sugars & salt. I still have sugar in my coffee. Can’t stomach it straight black. I only fry if I have meat that can’t be baked. I use canola if I fry. I eat deep pigmented fruits, peaches, nectarines, mangos, fresh cherries. Cantaloupe & melon, but not too much due to the sweetness & watermelon is high in potassium. I eat an apple here & there. And I still allow myself a very small helping of Blue Bell ice cream. I’m very small. If I eat as strict as some, I’d totally shrivel up & blow away😅. Not going to let pbc control everything in my life 😊👍

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you're right too- we can't let it control us. I might look into Canola oil... Thanks 're diet description. One of the things I'm trying to give up is too many nuts .I went to a dietician early in my diagnosis who advised to cut down on nuts (5 almonds a day she advised). So I now have very few. I love apples and usually eat two a day. As you say the odd good ice cream- tasty and a boost😆! The worst thing for me is working in a place where there's always chocolate or cake being brought in, despite the complaints about weight gain. After some time I have now developed resistance! I do love my coffee too☺ no sugar, I get that in other things! but milky. Also regular natural honey and raw yogurt. I eat 2/3 vegetarian, just always been easier food for me to digest. I think one thing that stands out alright, is that this condition is certainly only one aspect of our lives. I am glad of this place we can all communicate in though.

It's odd Gwillistexus, but I've never stayed in contact with people on line this way before. It's been so valuable to me. I have left it for periods but find my self reconnecting again. I'm glad it's here. Take care. Anne

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Oh chocolate is my weakness. I’ve used canola for years. 5 almonds a day...serious😂. What’s the use, lol! Sounds like you follow a good diet. I always enjoy chatting. Feel free to pm me if you like. I’m not connected to HU during the day. Only when I’m home with WiFi. Take care🦋

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Why wont he switch you to tablets? I too had a serious issue with the capsules and switched to the tablets and no issues now. I also order mine through Canada pharmacy because my insurance does not cover them here in the US. I'd look into a new doc. You pay him to help you.

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Donna, he said if allergic to one, probably the other. Yes I’m waiting for appt with hep. I agree😊 I’m glad you told me your experience with capsules. That helps me. Do you take Urso forte or which?

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I take Ursocol made by Sun Pharmaceuticals. 300mg.

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I’ll put that on my list of questions. Pretty sure my appt will be in October so I have lots of time for notes. Thanks for the info. 😊

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I know...! Thanks Gwillistexus 😙

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It certainly cannot hurt to try, that's for sure!

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