Tuesday's Tips

[DonnaBoll]

What piece of information do you wish someone had not told you - or you read - when first diagnosed?

[DonnaBoll Administrator]

The misinformation too many members find on 'Mr. Google' when first diagnosed is almost always the same. You have been given no guidance about what accurate and authoritative sources that can be used. All too often you've read that 'you have 5 years to live'. This couldn't possibly be any more devastating to read - and so wrong.

When someone takes Urso, and is considered a responder, that person has exactly the same life expectancy as someone who doesn't even have PBC.

If no other reason than this, always use the best sources of information. These include The PBC Foundation, American Liver Foundation, Canadian PBC Society, and articles from The Cleveland and Mayo Clinics.

[Chrisprio]

when I was first diagnosed I was told, by a Registrar over the phone as I was walking down the high street, that I had PBC (using the word Cirrhosis, which immediately terrified me), that I would have to take medication for life and if this did not work I’d have to have a liver transplant. I was of course shocked and devastated. Once I’d dried my tears, after ringing my partner, I found and contacted the PBC Foundation.

After great support from the PBC Foundation I changed hospital, changed to a wonderful, knowledgeable Consultant who said this is a disease of the whole body, not just the liver. I was told that fatigue is like living through jet lag (this really helped my partner understand). He asked if I get wiped out even after fun events, like socialising with family. He said social interactions can be exhausting. With fatigue, he said there can be good periods and bad periods, and within those good days and bad days. He told me to trust myself and I’d find my way through, find how it was best for me to be with the fatigue, with my PBC symptoms. And, like I’ve seen others say here, he said I would most likely die with PBC not because it. He introduced me to their specialist PBC nurse and said I could contact her anytime.

Thank you PBC Foundation.

[DonnaBoll Administrator in reply to Chrisprio]

Getting the right information from the right sources can make all the difference both mentally as well as physically for us. The PBC Foundation is unparalleled in their pursuit of education and support. So glad you found them!!!

[sleepytink]

Sadly my consultant very bluntly told me that I would need a transplant within 5 years and when my husband said why can she have one now, his answer was because 1/100 die on the table its a very serious surgery. With hindsight the man should be shot, the mental anguish he caused me was beyond extreme. Just for balance I must say I'm now 12 years post diagnosis and no further advanced and a non responder to Urso !!

[DonnaBoll Administrator in reply to sleepytink]

I would agree that docs like that have no business caring for the people with a disease that they know nothing about. What mental damage was done is always there with you in the back of your mind. You know how wrong this information is! If you are a responder to Urso, it is a fact that your life expectancy is no different than someone who doesn't even have PBC. Live your life!!! Are you taking any medication for your PBC if you are a non responder?

[sleepytink in reply to DonnaBoll]

no funny enough and believe it our not my consultant still keeps telling me to try Urso again and when I point out that as 12 years later I have not deteriorated why would I bother with drugs again. She cannot give me a good answer apart from to say that clinical those on Urso live longer, when I asked how they could possibly know that , she changed the subject again. The whole situation for me I feel is farcical and when I got to 10 years I kind of breathed a sigh of relief and decided to take back as much control of my life as I am able to and I live my life my way now instead of waiting for something awful to beset me. Having said that my Dr has just recommended me for a new trial, can't remember which one but waiting to hear. Ps how's your Covid going ?

[DonnaBoll Administrator in reply to sleepytink]

Thank you for your honesty. Urso has been proven to be the first line of treatment by slowing the disease progression to cirrhosis by typically seeing a reasonable improvement in the liver enzymes. Although every clinician should offer their patients Urso, it is the patient' s ultimate decision. I'm sure you have liver enzymes drawn every 3-6 months. You are very fortunate to have 10 years of disease not progressing. I only hope that if your enzymes do begin to elevate that you at least revisit the subject of taking Urso.

I finally am feeling better with the Covid. I even fixed my hair for the first time in over a week and ran some errands. Fatigue is so much better for me. Thanks for asking.

[Michi1]

That with lifestyle changes it is possible not only to slow or stop the progression of the disease, but to actually reverse damage to your liver.

[DonnaBoll Administrator in reply to Michi1]

If only that was true! We know that lifestyle changes as far as exercise and eating healthy can all help us, but PBC will still be present. Being that responder to Urso makes the real difference along with whatever changes we make in our lives to be 'healthy'. I take it you are an Urso responder now?

[Michi1 in reply to DonnaBoll]

Donna, the research is just beginning to uncover the massive impact of our lifestyle on all auto immune conditions including PBC. For instance, there is research out there showing that there is a pattern in the Microbiome of people with PBC that is different from others and may be related to the disease. What affects our Microbiome?Nutrition. Mindset. Exercise. Mindset can have a huge impact as well both in affecting how we perceive things, and therefore how we respond to them, but also our stress levels. Chronic stress is also known to have a significant impact on the triggering of auto immune conditions and could affect whether or not the disease is active or in remission.

The last thing I intend to do is cause people who are struggling to feel that it is in some way their fault. I am also not recommending people avoid Urso. I tried that with my doctor’s supervision and it didn’t work. However, making changes can help, and the research is starting to prove that. I understand that PBC will always be with me, but it does not define me. To the extent that I can take action that could have a positive impact on the trajectory of the disease, I will do that.we all can choose our own path based on what works for us.

I am an Urso responder but have also changed my lifestyle 180° since before my diagnosis. At the patients symposium sponsored by my doctor recently, there were presentations on nutrition and stress management and we were shown studies that support those things having a positive impact on the trajectory of the disease. This was not the state of the research in 2016 when I was diagnosed but it is today. The other thing we were told, which I loved hearing, was that black coffee is liver protective. We were advised to keep drinking our coffee, 2 to 3 cups a day! Being an avid coffee addict I was happy to hear that!

[DonnaBoll Administrator in reply to Michi1]

I hope it didn't come across that lifestyle changes can't make a difference. They do, indeed. They certainly largely contribute to overall well being.. and you're right "it just makes us feel better". When we are feeling healthy both mentally and physically our whole outlook is more positive. I agree with everything you said. Stress can actually cause our fatigue and itching increase. Stress management and overall self care is more important than ever - especially with any chronic illness. I was glad to hear about coffee, as well. I love my morning coffee. If there is any other information you can share from the patients' symposium, please do so. I hope we all realize the importance of self care. We matter and we deserve it!

[Toddyboo in reply to Michi1]

Michi1,

I am confused do you take Urso now and are a responder or did you try urso and it didnt work for you so you manage your pbc through lifestyle changes.

[Michi1 in reply to Toddyboo]

I do both.

[Michi1 in reply to DonnaBoll]

With respect to reversing liver damage, when I was diagnosed, I was told that the best I could hope for with treatment was to slow the progression of the disease. At my doctor‘s patient symposium, I asked that question specifically: “is it possible to reverse liver damage caused by the disease? I was told that it could be slowed but not reversed. However, my fibroscan scores have gone from stage two to stage zero. Am I correct and thinking that the damage may have been reversed to some degree?“ The answer I got was that yes, we can reverse the damage over time. New advances are coming all the time. Hopefully soon there will be a better solution for those who do not respond to Urso. In the meantime, what harm could come from adopting healthier habits, then improve your Microbiome and make you feel better?

[DonnaBoll Administrator in reply to Michi1]

Adapting healthier all around living habits benefits anyone - even if they don't have a chronic illness. I too believe that in the future there will be other options to those who don't respond to Urso. I know when I was diagnosed in 1985, Urso was just coming on the market. That was all there was. I can remember coming home from my appointment in the hepatology clinic with bags of Urso from the drug company - at no cost. Things have changed for sure!

[lovesoccer]

Like others I was terrified when I saw on Google that I had 5-10 years to live. And I believe that was even on the Cleveland Clinic site. I had my husband come with me when I had my follow up visit after receiving my letter with PBC diagnosis. I was hyperventilating when the doc walked in. He was really great and assured me that we caught it early and that there are good drugs now, and asked me to just watch out and not get hit by a bus 😊. He also asked me if I like coffee, which I was ecstatic to learn that my coffee habit was a good thing for my condition.

I made some big lifestyle changes and lost 60 pounds (though I’ve gained a few back—need to get more strict again). I’m also blessed to be an Urso responder. Though i occasionally still get caught up in the mental aspect of having an incurable chronic disease, my outlook is good.

[DonnaBoll Administrator in reply to lovesoccer]

Thank you for such an honest and upbeat message. In the beginning we all are in panic mode - knowing nothing about whatever PBC is. Kindness from our doctor can make such a difference for sure. Being reassured that it is a disease that has a proven first line treatment drug surely helps us believe we can be 'ok'. Once we learn more we all feel (I hope) some real sense of determination not to let this disease run our lives. Good for you for the weight loss! Thank makes you feel good, I bet. Attitude is something we really have so much control over. We just to believe that.