I was just diagnosed with PBC. I don’t really know anything about the disease except what I’ve read on the internet and what my doctor told me. My doctor suggested that talking to others who understand would be healthy for me. I started medication at the beginning of December 2019- I was on ursofalk and now my doctor has put me on ursotan? Can this make a big change? I am only 23 years old and very scared- my previous doctor incorrectly diagnosed me with sarcoidosis last year and put me on steroids- this is the first time I have actually gotten a proper diagnosis. My doctor said it would take a year before I really feel better- is this true? I took a gap year between my two degrees last year and am now being forced to take another one. When will I start feeling better?
I would appreciate any advice you can give me. Thanks
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NewToPBC
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It's not the best news, but, not the end of the world either. PBC is an autoimmune slow progressing disease. If you respond to the medication, and, hopefully, you will, it'll slow down the progress even further. There are people on this forum who lived with PBC for decades. I'm not familiar with the medication you named. I've been taken Ursodiol since 2016. Perhaps, it depends on which country you are in. You asked when you are going to feel better. Do you have any specific symptoms that can be attributed to PBC? Often people don't even know they had the disease, at the time of diagnoses (frequently by chance, did the bloodwork for something else), as many, have no symptoms.
It's important not to fall to pieces and to stay positive, active, have a good balanced diet and reduce stress as much as possible (which is probably the hardest thing to do for all of us). Lots and lots of people with PBC continue living a normal life, having families, raising children and working.
I am sorry to read that you have been diagnosed with PBC and at such a young age however it is good that it has been caught early. Ursotan contains ursodeoxycholic acid which is the recommended first line treatment for PBC. My tablet is Ursofalk. URSO will help to bring down your marker numbers Alkaline Phosphatse (ALP), Bilirubin and Alanine Transaminase (ALT) and it is normal practice for blood results to be viewed over a one year period, this gives URSO time to work and to help us feel better.
Fatigue in PBC is quite a usual problem and I wonder if this is why you say you are now being forced to take another gap year. Unfortunately there is no real medication (as yet) to help with fatigue although it is recommended to try to exercise to energise yourself. By exercise I mean a walk in the fresh air although many of us do manage to do more. Try to do whatever makes you feel good inside and that will help.
If you suffer with the so called itch of PBC there are now treatments that can be recommended by your specialist. Come back to us if that is a problem - I am an itcher who has benefitted from the recommendations of the hepatologist.
Although there is no dedicated diet recommended again many of us have tweaked our diets to suit our systems. The mediterranean diet certainly seems to help many and some remove dairy and/or gluten from their diets. Certainly it is beneficial to avoid processed foods, high salt and sugar consumption. For myself I eat more vegetables, pulses and less meat than I used to and feel better for it. It is also beneficial to keep yourself at a healthy weight to reduce the stress on the liver.
Alcohol does not cause PBC and many of us are able to have the occasional glass of wine but if you do drink you may find it helpful to give up or reduce your consumption. My hepatologist said to keep alcohol within government guidelines but these days I drink very little others will have found they have benefitted from no alcohol at all.
Unlike some 20 years ago there is now quite a bit of research into second line treatments such as Obetacholic Acid (Ocaliva) which has proved very successful in those who do not respond to URSO also some specialists ar using medication from the fibrates group.
Robert from the PBC Foundation (free to join) has a good article in the pinned posts on PBC and Life Expectancy. For myself I was diagnosed back in 2006 but almost certainly it went undiagnosed/misdiagnosed for some 10 years previously.
It does not say on your profile which country you are from, depending on where you are you may find support groups in your area.
So sorry to hear you are feeling real rough. I missed a lot of work before they were able to diagnose the PBC & of course had to put up with people thinking I was burned out or just trying to get out of work. But, with the diagnosis I was finally able to set others straight. Unfortunately, I never really got feeling better. My diagnosis was in 2013 & I still experience lots of fatigue, & bouts of itching, dry mouth & eyes, nausea (though the nausea is getting better since gall bladder & spleen were removed - not related to PBC). Despite the fact that I am old I was working & going to school at the same time. I had to take semesters off from work & from school. I had always been an active person & it has been hard to adjust to not being able to do all that I would like. But, I am slowly learning to listen to my body & make the most of what I do have & can do.
Since you are early diagosed- I have a question for you ..did you have a memory problems, like foggy brain, inability to think straight? see my post. tx
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