I am 43 yo, live in maryland, 2 young children and feel like my life as I knew it just ended. I have never had any health issues. I had a blood test for a new life insurance and just like that..a huge shock. I am going for my first sonogram tomorrow. My GP told me not to worry because I was crying (after I searched the internet when I came home). She said that even though I have AMA M2 (47.6) and elevated LPT (alt is 42 and ggt is 141) that I still might not have PBC. I think I do. It just seems so obvious after reading everything online. I have read everything on the internet since yesterday and read all the reports of a short life expectancy and have read this site. I don't know what to think. I've cried and stayed in the bedroom away from the kids all weekend. I don't want to have an incurable illness. How do you live every day not knowing when it will progress?
New Diagnosis, Depressed: I am 43 yo, live in... - PBC Foundation
New Diagnosis, Depressed
Nicole, I understand completely. I was diagnosed in April. What you read is terrifying, as are the million other tests they will give you in the process of ruling other things out. But there's been so much progress, that you'll find much of what you're reading is outdated. I take ursodiol daily and it's controlling my disease. My liver specialist said he used to do tons of PBC transplants, but since Urso, he can't remember the last one he did. He said its highly unlikely that pbc will be my cause of death, but did warn me to protect myself (tests and lifestyle) from bone disease. I will admit I get tired, but I have a very busy, stressful life. I did just what you're doing - and it's hard to avoid self-diagnosing through the Internet. Try though to stay calm and be patient. i honestly am living my life as if disease free - BUT, with an excuse to take a nap if I need one. You're smart to reach out for advice. Having a community to go to for answers or input keeps you sane. You'll get good advice from experienced others on this site. Stay strong. And go enjoy your family!
Hi Nlaturno ,
I am interested to know what you mean when you say you were warned to protect yourself (tests and lifestyle) from bone disease. Having PBC are we more likely to get bone disease? What sort of bone disease, what tests and how we can protect ourselves from it.?
My liver specialist said bone thinning and bone disease are a real concern with PBC. He ordered a Dexa scan (bone density) and suggested twice yearly. Also recommends calcium and regular weight-bearing exercise.
Hello and welcome to a great support group.
It took me about 4 weeks for me to wrap my head around the whole thing. After that my life has changed for the better. Yes that is right my life improved after finding out about pbc. Nobody is guaranteed of tomorrow pbc or not. Now I enjoy the little things more then ever. I work out more, travel often and hold my wife tighter and longer. Right now I'm sitting on a San Francisco bay, 2800 miles from my home. Just got done hanging out with my mom and brother for the weekend. This trip is something that I will do more often!!!
From your blood results it looks like They found it early and with the right treatment, urso, scans and good doctors. You will live a long healthy life. Take care of yourself because your family needs you. Like on the airplane they say to put your mask on first before helping others. That one line is pretty powerful in other parts of life also.
If you need help I'm 5 hours away in north Carolina and I would drop everything to help a fellow pbcer out.
There is a quote that you will see often. You will most likely die with pbc not from it!
Randy
Randy I feel like I needed to hear your words today . Thanks for posting
Not a problem! Funny thing is I'm out west visiting my mom again. This time I'm out here playing nurse after her surgrey. They removed about 10 inches of her small intestines due to her long battle with crohns diease. This is about the 5th or 6th time getting cut open. So in the past year her dog died, house burnt to the ground in a wild fire and now this surgery. She has a great outlook on the whole thing. Strongest person I know!!!
Hi Nicole
I'm in the uk and was diagnosed this time last year...I still haven't really got my head round it , and I have moments on panic. But the picture is good. I take urso and my blood results are encouraging. I went to a local support group there was a lady there in her late 80s fit and well. Don't push yr family away by locking yourself in yr room. Wait till you see the specialist discuss your fears and look after yourself. I'd been ill for about 7 years before my diagnosis. More extreme fatigue than anything else. But it has changed my out look on life...I'm all for saying.. I love you ..more and stopped running round like a mad woman ignoring all the nice things in life. You could be run over by a bus tomorrow just enjoy yourself now. Put yourself first more often look after yourself and take yr drugs and your life will be a long and happy one. In time you ll be able to put this diagnosis to the back of your mind and get on with living. Good luck
Join the PBC Foundation (if you haven`t already) link at the top of the page . Read their info and leave the internet alone!
I`m 74 and PBC has not stopped me doing anything I want to do.
Hello Nicole786.
From how you deduce the information personally I'd wait and see.
I started itching back in early 2010. I was 45 at the time. I took myself off to my GP a fortnight later as it wasn't letting up. I was fatigued at the time but never thought anything of that due to working long hours full-time. I had blood test and it came back with abnormal LFTs (liver function test). I started having other blood tests to rule this and that out. You can actually have a bone problem with abnormal LFTs so the GP had to rule this out. There are also other reasons that one can have abnormal LFTs.
I never received a figure for the positive 'high titre' of AMAs that I had when I finally went to see a hospital consultant 7 months after first seeing the GP. My ultrasound I had in summer 2010 showed me to have a normal looking liver and surrounding organs. I don't know what is considered a definite figure to diagnose PBC with due to a positive presence of AMAs. My doctor went off my symptons, my LFTs, a GGT blood test and the AMAs.
I looked in library books and also on the net months prior to being informed I had PBC but I never actually tried to self-diagnose myself. I did think that I just had something that would simply be treat or would go away. I did keep informed of most of the bloods I was having along the way as I do like to know. I hoped I didn't have PBC or any other condition that could not be cured but unfortunately for me that was the diagnosis. I was 46 by then. I am now not far off 51. I've been taking urso 4yrs and I still do have the itch though it is more confined to night these days.
I'd not go into too much depth about reading into PBC. I did once glance through the progression but I switched off and resolved with myself that I would deal with things as and when as otherwise I'd end up spending the rest of my life letting it simply rule everything I was doing.
My bloods are better than they were back in 2010 and I'm doing quite well. I hate itching but I have to put up with it. Thankfully at the moment it isn't unbearable.
It does take time to accept one has PBC. You go through wondering how you got it, the why, what you might have done to start it off but I find I always come to the same conclusion, I have no answer and there doesn't appear to have been one found as yet so I just decided to get on with living life and not waste it thinking about how long I'll be here, how it will go. Easier to just take it all day by day.
The one thing you have to do I think is look after yourself even better than you thought you might have done I think. I don't call PBC an illness myself. I think it can become one but for me currently I am walking about looking like I have nothing wrong with me and to me it is a lifelong condition that could more than likely be with me for the rest of a pretty long life. It is said that majority of patients with PBC die with it but not due to it.
Nicole - I live in PA and was diagnosed three years ago. If you are in an early stage, which it sounds like you are, they will put you on Ursoidial and the disesae will progress much slower. Get your ultrasounds, bloodwork and MRI's when the GI tells you to and you would be shocked how it can just become a nuisance rather than a terrifying disease. I understand being scared when you first get the diagnosis, I really was, and while my family was concerned, it has been years and now they forget. When you feel stronger about the whole thing you learn to live with it. But for right now, it's ok to be scared and not want to to get out of bed after the initial diagnosis. But live is powerful and pretty soon you'll start getting back into your life, take your medications, and live just as well and happily as you did before.
Callye
Chadds Ford, Pa
Hello Nicole, Try to stop worrying about this, you'll soon come to terms with it and find that life isn't very different to the one you had before all these tests. I was diagnosed two years ago at the age of 73, I had always had a very active life, eating well, very little alcohol and what I thought was a good diet. Like you I couldn't believe my diagnosis, which was made like your own, through a routine medical check. I had some symptons over two or three years, like itching, fatigue etc. but didn't bother going to my doctor as I thought they were allergies and also the aging process. Looking back If I had gone to see my GP sooner I could have started on the Urso and then perhaps I wouldn't have had the Liver damage which showed up on my scan. However, I can't say I feel any worse and now at 75 I don't think I am doing too bad. I don't know what stage I am at and have decided I don't want to know. I just live each day as it comes, keep taking the medication and continue with my checkups. Take care, look after yourself and your family and you will enjoy a long and happy life and who knows there may be a cure for this condition in the not too distant future.
had sonogram, saw GI specialist who will not prescribe urso until i have a liver biopsy. asked him why us doctors require biopsy but uk doctors dont....i dont think he liked that but i just wanted the urso today. he said to not measure this in weeks but rather decades so i guess a few weeks wont hurt. i just wanted it for peace of mind. i appreciate the comments. i am seeing a therapist tonight. i am going to call a hepatologist at hopkins. i live 20 mins from JHU. has anyone been there and could recommend a doctor. my biopsy is feb 4th so i thought i could get an appt next month at hopkins. is there anything else i should be doing? i have to admit i am terrified of tthe itching. it hasnt started yet so i think the fear is worse than reality. thank you for the advice. i thought there was no hope but i feel a little better today.
Hello. I am 46 and nearly 3 years diagnosed. All going well with Meds and blood results are so improved. Liver functioning back to normal. Still have a problem with iron absorption but can easily deal with that. I have started new job, have been all around the world on numerous holidays and haven't stopped since diagnoses. It hasn't and won't stop me. I love life and feel great. Remember medical advancements happen all the time but No one is guaranteed a definite number of years. We are kinda lucky to have a disease that can be managed. Be well x
Nicole i live just down the road in va. I'm not convinced that you have pbc. if you do, it sounds like the prognosis is excellent. You mentioned alt and ggt. but pbc is a choleastic disease, which is associated with elevated alp. what was your alp?
my alp is 134. i am positive m2 mitochondrial antibodies. My blood test results say mitichondrial m2 antibodies are found in 96% of patients with PBC. I also abused ibruprofen. My 1st test result 2 months earlier had alp of 154 ggt 201 and alt at 126. After stopping motrin abuse, alp was 134 ggt 141 and alt at 42. I think some of the elevated levels are due to taking too much motrin...i took 1600 to 2400 mgs a day (not every day but at least 5 days a month. It is the m2 antibody that is more conclusive, isnt it. My gi doc didnt seem worried, told me this is something to monitor over decades and in the past 20 yrs he could only recall one person needing a liver transplant. I am going to wait for biopsy, push for urso then and see a hepatolgist at hopkins. Where do you see specialist in va?
Nicole,
Thanks for sharing this additional information. Let me preface this by saying that I'm not a doctor. Like everyone here, I'm here for support, to bounce ideas off of, to share what's worked and hasn't, and to listen. So please take these comments in that spirit.
First, it's certainly possible that you have PBC. Based on what you describe, it's a very distinct possibility. The only way to confirm it (or rule it out) is a biopsy, so you're doing the right thing by having one. As your doctor said, these things are measured in decades, not months. So, if you have PBC, then waiting until after 2/4 to start urso is not a big deal. And if you don't, there's no reason to put large quantities of bile acid into your system for no reason. So again, you're absolutely doing the right thing. I hope you can take some comfort in that.
Second, you don't meet the clinical criteria for PBC. The clinical criteria are 2 of 3 out of: elevated ALP, positive AMA M2, and a positive biopsy finding. Your current ALP level, while high, is within the reference range. In addition, based on what you've shared, you have no symptoms, no other autoimmune diseases, and no family history. Your ALT level is just barely elevated. And by a commonly used standard (e.g. if you Google "ALT reference range" and look at the given answer), your ALT is also within the normal range (many labs, including the one cited by Google, use an upper limit of normal of 56). At my lab in DC (George Washington Medical Faculty Associates), the upper limit of normal is 44, so you would count as normal there as well. Your only elevated level, in fact, is GGT. This is choleastic, and is associated with PBC. However, it's not sufficient for a PBC diagnosis, even in the presence of AMA M2. Moreover, it may be due to another factor you mentioned: motrin abuse is associated with these sorts of elevations.
Finally, there's the elephant in the room: the positive AMA M2 finding. I acknowledge that this is a serological hallmark of PBC, and that 96% of PBC patients are AMA positive, as opposed to only 0.5% of the general population. But these numbers don't exist in a vacuum. As GrittyReads and many others on this site have pointed out, saying that 96% of PBC patients are AMA+ is not the same as saying as that 96% of AMA+ people have PBC. In fact, even using the most generous possible estimates of PBC prevalence and gender ratio, only about 10% of AMA+ women have PBC. I know that this sounds ludicrous, given that AMA is said to be "virtually diagnostic" of PBC. But any math student can tell you that doesn't make sense. There is simply no estimate of PBC prevalence that is anywhere near 1 in 200, which is the rate of AMA positivity in the general population. The highest PBC prevalence I've seen published is 1 in 3000, with most estimates being much less. From this it follows that most AMA positive people don't have, and won't get, PBC. Again, I'm not saying that you don't have the disease--it's a very distinct possibility that you do. But it's also important not to jump to conclusions.
There is a condition called chronic vanishing bile duct syndrome. The symptoms are largely the same as those of PBC. But it's chronic (typically aggravated by prolonged exposure to a hepatoxic drug, such as Motrin), and typically resolves when exposure to that drug is stopped. Indeed, you've already noted that your liver levels have improved since you stopped the Motrin. I wonder how much more they will improve as your liver has a chance to further heal. If you indeed have PBC, then the fact that you may have sustained PBC-like liver injuries or elevations from Motrin abuse as well is, at least, a startling coincidence.
Finally, supposing for the moment that you do have PBC, this is likely a very early detection: You don't have ALP elevation, nor any symptoms. As your doctor said, these things are measured in decades. While the disease would likely affect your life in some ways, as many others have said, you're much more likely to die with PBC than from it. In the urso era, transplantation is rare. And if you do need a transplant, PBC patients are among the best candidates, and tend to have more favorable outcomes than almost any other group.
I offer none of this to speculate, or to replace medical advice. As I said, you'll have a definite diagnosis one way or the other soon enough. But I do offer it to hopefully give you some peace of mind. It's by no means a slam dunk that you have PBC. And if you do, there's no reason to think the prognosis is anything other than excellent. Also, feel free to direct message me for the name and contact info of the specialists I see at GW.
Take care and hang in there. We are all rooting for you.
Kevin
Dear Nicole, don't worry, we live much-much better than we could expect in the first weeks after the diagnosis. The shock helps me appriciate every good day. When not so well (what's mainly due to other health problems) I try to think, that I feel much better, than expected after all my readings. Life expectancy is not that bad. I've read an important sentence: we don't die of PBC. I've met women living already 25-60 years with this incurable illness. PBC is our faithful partner, it needs our attention, but really most of us lives a very good life, we are active, and the only medicament, URSO helps a lot. Listen, we are not healthy and can't do with our body, what healthy people can (mainly I mean here tortureing it, overusing, etc.) but we can have LONG and HAPPY LIVES. I didn't believe the lady, who wrote, that she was dyeing (how do You write this?) for more than a year and now she is working and all wright. Please don't loose too much time on desperation, it doesn't help, I'm very sorry, I couldn't spare this phase, I found this site a little too late, after about a whole year of tears, and what's worse of being frightened terribly. Cheer up, don't hesitate to write here, and try to be happy with Your children. When I'm down sometimes, I think of all good things, what happened to me in the life, and try to be thankful for them. Think of today, here and now, and clouds of the future will not blinding, just sharpen Your eyes to the joys of everyday life. A person, who lost his sight, after long years of blindness when got healthy again was surprised, that washing up can be such a great joy, when You watch the colourful balls flying from the water...
I send You hugs and warm greetings: G
Hi Nicole,
I wanted to write to reassure you. My mum had a very late diagnosis at 38 and she was at stage 4 and had two liver transplants within 9 months.
After her recovery she worked full time as a class teacher and SENCo right up until 2 years ago- 21 years later.
She did have related health problems but she decided she wouldn't let it define her. Many people would never even knew she was ill.
Whilst she had ups and downs health wise it never stopped her living her life. She was the best mum and grandma.
We are so close as a family, because we always had her illness to contend with, it made us value her and life, so much more.
I can't begin to imagine how you are feeling and I'm not for one second telling you to not feel depressed and scared and angry. You would be a robot if you weren't. But I just wanted you to know there is a life with pbc. It might not be the one you imagined but it can be wonderful too.
Hi, although post TX I'm sure all your problems can be felt with or at least controlled. I do admit though I have not heard of any problems with the bones before. Sure it will change your life a bit, but take things as they come. Hard as it seems try to stay stress free I found that was a big help.. Good luck and have a happy future.
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