Learn how to use Mayo Clinic Connect
Request an Appointment
I was told Friday that I have this. Can someone who has this tell me what to expect?
Interested in more discussions like this? Go to the Digestive Health group.
Also told this Friday I have this disease. Any suggestions?
I too was recently diagnosed with PBC, two weeks to be exact. I have dealt with the chronic symptons since 2003. Since that time, I have been to one specialist after another with a diagnosis of PTSD, severe allergies,leukemia and the possibility of liver cancer. My life has been hell for 8 years. My family
ganged” up on me and told me that they would have me committed if I did not get my act together. I was told that I was a blemish on the stellar family reputation.
Complicating the situation is that I teach school. Most days I have a real hard time just getting out of bed. The ITCH has progressively gotten worse. It is not just arms and legs…it is hands,feet, chin, back,head, ect..
Fact is, I just went through an attack over the long weekend that once again leveled me to an all time low. I find that the attacks of itching and fatigue can be so intense that any kind of relief is welcomed.
As I said, recently I have seen a specialist that was able to pin point the diagnosis within days. My Primary Care Physician was of a mind that I was just a wigged out 54 year old woman and shoved another pill at me. In June of this year, I made and appointment and DEMANDED that I get the care that I have been paying for over the years. No more pills, no it is stress or allergies, etc… The lesson I learned is that I no longer stand still. I have become proactive with my health.
I have been on ursidiol for 2 weeks. The itch still is intense at times. But, the fear has subsided. And as hard as it was to hear of my diagnosis. My relief is that now I know. I have stage 2 and am very hopeful. I just wish the itching would stop! I too am looking for a network of people to get proactive with this disease. Any suggestions?
Jump to this post
Suzie, I know what you are going thru with the fatigue and the itching. I had another liver disease (PSC), and the symptoms you are experiencing are consistent for other liver diseases also.
For the itching (which is undescribable) I took an over-the-counter antihistamine. At first this helped give me some relief. Eventually my GI put me on Chlorestyramine; and that gave me the relief I needed. As far as a topical relief – I got some relief with Sarna anti itch lotion. And a warm bath in Aveeno bath treatment for itchy skin was helpful and soothing.
I, too, taught school, and the fatigue could be overwhelming at times.
I am glad that you now have a diagnosis and are getting the medical care that you need. It can be comforting to know that what you have has a name, and that you are not imagining it. Keep working with your GI and follow a healthy diet and keep up to date on those labs. That is my advice to you.
I was diagnosed over 3.5 years ago after many years of severe fatigue and no answers for why, after a gastrointerologist reviewed routine blood work. I have taken urso forte since diagnosis and my liver proteins are at the normal range. I have a professional career as a Safety Director at an air carrier and must work long hours and be on-call 24/7 as well as travel frequently on business. I work out with a trainer twice a week and get regular exercise and eat healthy. Rest is extremely critical and I take one of my weekend days to rest as much as possible. i am 56, a woman, wife, mother and grandmother. I personally do not know another person that has this condition with the exception of individuals that I have met online at pbc.org
Having internet friends with PBC has helped. These friends are the only individuals in my life that truly understand the challenges that PBCers face. I recommend connecting with pbc.org
It is difficult not to become frustrated with all the symptoms of PBC especially if you are used to being so active and balancing many life activities.
I have chosen not to discuss the condition nor inform others that i have the condition except close family and close friends. I live a full active life. I am open to any suggestions and/or questions from others. I have worked out with the trainer for seven months, and it has been one of my best decisions and i highly recommend exercise and eating healthy.
There is a group on Facebook for PBCers that is helpful as well as cheerful.
In 1996, at the age of 47, I was diagnosed PCB (by my very bright family MD)–a woman, who immediately sent me to Mayo. I was in the original trial studies for URSO and it is a good send. At the time of my diagnosis my prognosis was (due to no treatment) a decline in health and liver transplant. It was right after the death of Walter Payne from a similar disease. It was grim dx and at that time I was asymptomatic as my MD dx it so early. But despite URSO my health has gone down hill. I now have 5 autoimmune disorders as well as intractable chronic migraines and trigeminal neuralgia for which I had unsuccessful brain surgery. I have never talked/emailed anyone who had this disorder. It was not until I read the posts here that I understood my ‘hit the wall’ days when I absolutely cannot get enough sleep. I have been on disability since 1997 but continue to work part-time and do academic work (my profession). I am sorry to hear about the itching problem. For me this is minor although this year I have developed eczema which is slowing spreading across my body. It has been discouraging for someone who was super energetic and multitasking to have to ‘ratchet down’ my life and career. With my other health problems it has been difficult but I also feel grateful for an early dx and treatment. I am glad to find others on this site and I will go to PCB.org.
Hi everyone. I have known for a while that I have some sort of autoimmune disorder , but there has never been enough laboratory evidence for a diagnose.the question was whether it was autoimmune hepatitis or PBC. It was very obvious to me during my last pregnancy. (extreme fatigue, itchying, right upper quadrant pain, raynaud on my finger and intolerance to fatty food). It was so interesting to watch the autoimmune panel slowly change over years. I changed my diet completely. Now there is no fast food ever.no processed food and tons of veggies. My symptoms dramatically Improved with diet and exercise. Then I added intracellular cleansing and this helped further. It is not easy. I have to be aware of everything I eat all the time. Now the AMA is positive and my ANA is greater than 1000. The eczema is very uncomfortable. But I am still running and have a full time practice. My goal is to keep going as long as I can. So I planned to do 2 1/2 marathons and several 5 k and 10ks this year. I have 3 kids and I am always busy with them. My medical practice will continue as usual.
I am so sorry that it has been so hard for you. I wish you the best.
How very kind of you to write with words of encouragement. I am glad that you are able to keep so much of your life going in a positive direction. In the past 3 years I have also changed my diet and this has been very helpful. I do wish this was less a ‘discover on your own’ process and something more straightforward. I have found my way to basically your diet through a process of elimination–eliminating foods that made me uncomfortable. The exercise issue has been more of a challenge for me because of my other health problems. Recently I discovered swimming in a very warm pool (at a special medical center) not only an exercised that ‘worked’ (didn’t cause other problems to flare up) but is also enjoyable. I am hoping this will be something I can continue. My biggest challenge the last few years has been trigeminal neurelgia. After years of failed treatment trials which I refer to as the ‘throw spaghetti at the wall’ approach, I am now on a pain patch which has absolutely changed my life. I am now 95% pain free for the first time in at least 5 years and feel like myself again. However, psychologically it has been one of the MOST challenging adjustments to date: to accept and ‘give in’ to the reality that I need a pain patch to live my life. I have never smoked, drank, used anything ever in my life and I just never thought I would have to do this. I agreed to try it as a trial–like so many other ‘lets try this’. Nothing else has worked–really NOTHING including pain management programs, etc. Apparently my form of trigeminal neurelgia has morphed from the garden variety that is treatable through surgery and/or medications to something like a super-horror condition in which I had excrutiating, intractable, chronic pain every day that was barely managed with pain meds. Because of my liver and other problems I couldn’t tolerate any of the neurological meds. I was on Vicoprofen but would only allow myself 2 a day which meant I was incapacitated by pain. I refused oxycotin because I didn’t want to be addicted. Now, after a month trial, I realize that the life I had been living for 5 years was really no life. Because of head pain I often did not leave my house for weeks at a time because if I went outside my face would trigger pain, which triger a migraine which left me with days in bed unable to function. So I am now on the patch and I have come to terms with it. I probably will never be 100% happy about it–I am always going to be looking and hoping for some alternative. But if this is what I have to do to have an actual life where I can go swimming, enjoy my grandsons kisses (rather than physically cringing inside from the pain) than I will go with it. I guess I have no choice but I am now ’embracing’ the choice–yet still hoping.
Sorry for this long reply. I just wanted to say you are an inspiration and also how kind of you to send words of support my way. I appreciate it.
I was speaking to my friend yesterday about the lack of knowledge that the medical world has regarding many diagnoses. Although medicine has made great strides it still has a long way to go. Nutrition definitely is lacking and most doctors don’t know and can’t advice on nutritional changes.
I can’t imagine having intractable pain. You’re right, with liver problem you can’t tolerate Lyrica, Neurontin or anything else. Even Motrin is a problem. Did you ever try Accupuncture? Sometimes other forms of medicine have good outcomes.
Well, keep going and never give up!
Thank you for writing back. I was afraid I had been a bit TMI and put everyone off. I really have not shared that much about my health challenges –not even my children really know. I feel it will put people off and I will feel even more isolated and weird. So I am relieved and pleased you wrote back. And thank you for the suggestions. BELIEVE ME: I have tried everything!! Well, I shouldn’t say everything because I haven’t tried marijuana or any other kind of herbal thing because I really don’t know how my liver would handle it (I have had really bad experiences with the FDA meds so was just plain scared of anything else–like I needed more problems). At one point I had myself convinced that reflexology was really the ticket for trigeminal neurelgia but it was a good example of ‘wanting to believe’ and also an example of really really wanting something to work doesn’t mean it will. So I have been on both sides of that experience. I think exercise and massage really help for relaxation and when you have chronic pain the muscles just tense no matter how much meditation you do. So I have found that to work as an adjunctive method along with prayer. It takes you out of the here and now and makes coping ‘easier’. It still feels like Sisyphus but I am not giving up. There must be SOMETHING to be learned from this if not by me than others or medicine in general. Than you again. It means a lot that you wrote back.
I have Hep C (diagnosed 97) and cirrhosis (diagnosed 09). Today I just found out my test was positive for PBC! The itching is off the wall. I am so tired of being sick and tired. Ready for any and all suggestions about alternative therapy. My doc said the Hep C triggered the PBC. I have portal hypertension with esophageal varices. Covered in bruises from scratching. Adding insult to injury, my mom is dying. I am trying to stay upbeat! Any suggestions are VERY welcome. TY Shelley
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In