Help

[Lillibet987]

I've just been diagnosed with pbc aged 18, it was just picked up on a routine blood test and I'm really struggling to come to terms. There's so much info on the Internet and in i dont know what's accurate. My doctor isn't much help either. Help?

[Lillibet987]

By the way, I know it's a young age, my doctor said most people if not all aren't diagnosed before age 20 but it was just caught young in me. Im just very overwhelmed so any help would be great

[LindyRich in reply to Lillibet987]

Please dont panic. There is a lot of old and incorrect information on the internet. First thing to do is join the PBC Foundation. there is support and reliable information waiting for you.

There is also a helpline.

Do make use of it, it will help.

Tell us more information. Have you seen a consultant? Did he/she prescribe any medication? Which country are you in?

In my experience people on here will give you useful information.

[Ktltel]

Hi lillibet987, wow sweetie you are young to have this auto immune disease. Research, like homework. Research auto immune disease, research Low Dose Naltrexone, research Functional Medicine Doctor. The best advice I can share with you is this.. Attack the auto immune disease and not just the taking of drugs for the symptoms. Do both. Hugs. ❤

[Chazzy]

I was dx in May and only just coming to terms with it. I'm 31 which feels very young so can only imagine how hard it is for you to hear the news at 18.

Best thing I can say is talk about it. Even if it's on here, people are wonderful and want to help. It is scary but I try and think now that I have to put to the back of my mind and get on with my life otherwise it'll become my life. Some days that's hard but you have everything infront of you. PBC foundation were brilliant. I rang them and it gave me hope for the future.

[Pea1234]

Live your life to the fullest. You won't die from this. It's like one of those annoying things you have but you will live a long life.

[Chrisprio]

Hi lillibet987,

firstly, my heart goes out to you. It's quite something for anyone to be diagnosed with PBC but it must be even more so at 18. However, given that you have the disease it's probably a really good thing to have it diagnosed so early. Many of us, myself included, had years before it was diagnosed but knowing what it is means we can begin to get our heads round it and start managing the effects of it in our lives.

I agree with LindyRich that the first place to start is the PBC Foundation, they are experts in this and can tailor their responses to our individual concerns, experiences and needs. They will have all the info on how the treatments, etc work, and whilst Ursodeoxycholic acid can't be tolerated by all, it seems to be a very effective medication with few side effects.

My personal advice is to make sure you have trusted people you can talk to and cry with if necessary. Be gentle and patient with yourself, having PBC will be part of who you are but it doesn't define who you are. Find what nourishes and resources you, those things that make you feel good, and make sure you have plenty if these in your life. Find fun ways to feel good about your body like walking, dancing (around the house in my case), sports, pampering sessions. (My experience of fatigue means that at times I really feel like I can't imagine getting up and out to do some exercise but once I do I feel so much better - other times I really can't and chose to rest. People around me know this is the deal, that "I'm predictably unpredictable" and are fine with it). I guess this links to the final one of pace yourself, rest when you need to, trust yourself, you know what your body needs.

I'm sorry that you need to be part of this forum but now that you are Welcome 😊. Life with PBC can be great.

Best wishes, Cx

[GrittyReads]

Join the 'PBC foundation' they host this site on 'Health Unlocked' and there is a link to their site at the top of the page. There you will find loads of up-to-date info, and details (email and phone) to talk to their trained advisors. If you join - it's free - you get their wonderful PBC compendium, which tells you all you need to know. (NB a lot of general stuff online is out-of-date and overly scary, the condition is much more manageable since the development of Urso, and new treatments are be trialled.) Also, read around on here, there are some others as young as you. There is also a Facebook Group.

If you are in the UK, and the Dr you refer to is your GP, he should refer you to a consultant - ask to be seen by a hepatologist, rather than a general gastroenterologist, even better if you can see a PBC specialist.

Also, get hold of a copy of all your tests results, records etc on 'PBC' from your Dr - again, in the NHS this is your right, should be free if it's recent, but there is a charge for older stuff, so ask how much. You need to know the grounds for your diagnosis.

Also, 'chill'!! Treat yourself, have fun, do things you love, don't worry and avoid stress. You have to become your own best expert on this condtion, as so many people - even medics - know nothing! But, at the same time coddle yourself - stress is the worst things for autoimmune conditions, so don't let it get to you! Get out there and enjoy life !

[slck]

When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of resources that will help to answer them.

Warren

[uandisharing]

You will be alright. They probably caught it early enough that you will live your full lifespan. You need to find out what stage you are in. And, I think everyone on here is on Urso. So, make sure you ask your doctor about that medication. If the doctor you have doesn't know much about PBC. Search the net and find one that does. Good Luck, stay calm. There's worst things you could have. Hugs

[KatherineM_PBC]

Hi Lillibet. If like me you were diagnosed, without having any symptoms, but from a routine blood test, then GOOD NEWS. If you haven't already been referred to a specialist, insist that your Doc does that. The Consultant will monitor you annually but in the meantime do a bit of research to help yourself. Like most have said, join the PBC Foundation and if you are worried or scared call them. Don't read half of what is even posted on here, it won't apply to you. I was diagnosed 3 years ago, I don't itch, and don't suffer from fatigue, and if you follow some simple life style measures I'm sure you won't either. Eat a really good diet if you can, mostly fresh food, not convenience food. Read up about auto-immune diet and how you can help your body, if not repair, not get any worse. I believe that alcohol IN MODERATION doesn't affect the condition, but it makes the liver work harder, so I have cut right back (still enjoy a couple of glasses of wine at weekends). As a teenager you might see your pals getting sloshed and want to be like them, but you won't be the one waking up with a banging hangover the next day You have found a great family here, so don't feel alone. Take care x

[liver-bird]

Hello Lillibet - welcome to the very exclusive PBC club - you must be one of our youngest members. join the pbc foundation and take their advice if you have any questions. Stay in touch with this site as many kind and helpful people here who understand your feelings better than most. Try not to worry, but eat healthily with very little alcohol. Big hug. Diane

[Shine1]

Hello,

It's a real shock to get your head round, especially if it was a surprise diagnosis. I wanted to reply and say to you that while 18 is a very young age to be diagnosed, find solace in that. It seems to often be the case that when you're young symptoms and illnesses can be taken less seriously. I was diagnosed quite young too and had symptoms for many years before, but I actually felt a relief in this. After years of symptoms and knowing my body wasn't well to finally have a label of an actual condition was a bittersweet relief. It hopefully means you now will be under monitioring and hospital care and have a chance to check in, ask questions, get your blood results regularly.

Now you can do research, (beware of general online sites, saw some horror stories about years to live, wish I had known about PBC Foundation and The Britiish Liver Trust sites at the time!) Arm yourself with advice and things that can help you, from gentle exercise, a good diet, connecting with people and starting Urso meds.

I echo many of the nice members above- we are all here to support each other. It can be a hard and emptional thing to get your head round, especally at first, so if you can, speak to friends you want to confide in and family, as you'll probably sometimes need comfort or distraction.

And plan lots of fun things for you. Take care X

[Debbiem40]

Hi Lillibet I was diagnosed 13 years ago, aged 33, so quite young, but not as young as you!

Please don't worry, I feel no different now to how I did then. I have been symptom free for all that time and my PBC was only picked up due to a blood test. I go out and have fun, have had many a hangover over the past 13 years, PLEASE don't let it put you off being young and having fun. The only thing I have been told not to do was smoke (but thats a given anyway, no matter what is wrong with you), never been told not to drink, never been told what to eat.

And as has been said above,you are more likely to die with this than from this.

[Becca75]

It's hard to digest everything I know- I'm sorry about your diagnosis 😢 Take it one yep at a time- start your meds and get adjusted to those . If your doctor isn't much help / see if you can get anew one ... See a specialist if you can .

[Bonnieanne54]

For whatever it's worth I was diagnosed in 1990 and it's been under control with Urso since then. Except for the occasional itching and fatigue I forget I have it