18 and newly diagnosed with PBC

[18yrsmuse]

In the middle of last year I was diagnosed, but with everything going on, I feel as though I don't know much about the disease. I've been put on URSO and it seems to be working so far, but I was wondering what reliable sources I can look at to feel more comfortable with this diagnosis. I have muscle pain and bone pain which correlate with a Vitamin D deficiency, which I have had before, and was wondering if this can be related to PBC?

As someone younger with this diagnosis, I find myself anxious about what this could mean for my future. I don't know many people with this diagnosis let alone my age. Are there any good support groups or organisations online for me to find more people like me?

[Tcmb50]

Hi, You are so young to be facing this diagnosis but try not to worry as you still have your whole life ahead of you. In terms of researching PBC, you should definitely join the PBC Foundation as they will provide a wealth of up to date information. If you can try not to google as there is so much incorrect and outdated information that can be quite frightening. There is also a definitive guide for PBC patients written by Professor David Jones. You can get it on amazon, £14.99. I think with the information provided in this book and from the foundation you will have all your questions answered and will feel much better. Take care of yourself.

[ninjagirlwebb]

Pbc patients are more susceptible to vitamin D deficiencies and are at higher risk for osteoporosis as well. Your doctor will likely continue to monitor the D levels.

My hepatologist also had me do a bone density scan to establish a baseline upon diagnosis. I have done like 3-4 of them so far. We need to do strength training to help our bones.

The American Liver Association has some info on pbc so you can look at that as well as join the pbc foundation. Or if you have an appetite to read medical journals, you can google and the research papers will show up. That was what I did when I was diagnosed. I read a lot of medical journals.

There was one that was particularly comprehensive and I highlighted certain points. Then I took it to my hepatologist and had him review the key points with me. He was impressed that I actually found that paper.

If you were diagnosed at an early stage and are responsive to urso, your life expectancy is the same as the normal population. Pbc is slow progressing so as long as your doctors monitor your condition, think you will be okay.

I think you should read what you can, jot down any questions/concerns you have and discuss with your doctor at your next appointment. It will definitely make you feel better.

Just take it one day at a time and live your life to its fullest. We can’t always control what is...but you can control how you react to the situation. Eat healthy, exercise, and live your life. Let your doctors do their job to help manage the pbc. You will be fine.

[butterflyEi]

Just to add to the other good ladies The PBC Foundation, register for free, holds a Tuesday afternoon self management session details on their Web site, there is a Q&A session on Thursday afternoons on Facebook live with specialists and professionals this is at 2 p.m. Also on Facebook live at 4 p.m. most days Robert Mitchell-Thain holds an hour of fun music and interaction with the PBC Foundation's service users which started at the beginning of lockdown to ensure there was a hand reaching out to anyone who needed it. I know it is a daunting prospect but with good management and input from all of us in the PBC community you will slowly take it in your stride.

[Sydgal]

Hi 18 is very young to be diagnosed with PBC , i was diagnosed in my early 30’s and was told that I was considered young to have this disease.

Joining PBC Foundation helped me and HealthUnlocked has others that share they experience and you can post questions to others that has PBC aswell.

Try not to worry or stress over something you can’t control as stress is not good for autoimmune disease.

You will be ok 🙂

[cvc20]

I agree with everyone above. I was very scared when i was first diagnosed as the first thing i did was Google PBC and it said life expectancy of 8 years! Totally incorrect of course. You will be fine I am sure and at your young age , you will benefit from all the current drug trials taking place now, as when new drugs get approved through the years, you will get to have them. They may even found a cure in the coming years!

[Ballymahon2]

Yes urso works well for me 1000mg a day.on it for 4 yrs.i am a urso responder

[Tallentire01]

Hi I've just been diagnosed too I'm 36. Trying to get my head around it all