Hello. I'm in the UK. Waiting on an MRI to diagnose pbc for sure. ITCH is the worse thing. I dont know how people cope. Nothing helps.
I'm 60 so relatively old, worry its the end for me as if I need a liver transplant I won't have it, as it would be too much at my age. I have a partner who is not supportive at all . How do you keep sane?
I've had bouts with itching on my forearms and ankles. My neck bones, C7 show osteopenia and degeneration. My neck is so sore I can't turn my neck but I think I'm finding remedies for that. I don't eat meat, or drink milk. Cheese, yogurt, eggs and fish yes. I drink an average of a cocktail a week. Sometimes only 1 per month. I do yoga every morning, teach yogaTuesday nights and sing meditate every Sunday at 5 am. I hike or bike about once every 2 weeks but recently I've been doing a para course every day, only 4 days so far. I lived with a 43 year old man for 4 years but he asked me to leave because his kids threatened they'd never see him again if I didn't leave. I never met them, they didn't want to meet me. Now he won't leave me alone to find someone else. He keeps working on renovating my house so I let him. Ive been taking Ursodoil for almost 20 years. I don't itch anymore. I dance in the mirror, sometimes belly dance. I'm 63 and feel 40, except for my neck and I get tired in the afternoons. Try yoga, it helped me relax, it's the breathing. You are welcome to join my donation or free class.😀
I can relate. I worry the same way you do, I really like doing yoga and I thinkmI was reasonably good at it until about a year ago I took time off because of a hernia repair. I thought the downward dogs and up dogs might might overstretch my new stitches. 4 months later when I went back to it my joints were all jammed up and tight and my lft's basically doubled. I was having trouble getting around so my doctor sent me to a physical therapist and it definitely helped but my joints are still tight. Mostly in the hip. Now I have started getting a rash on my legs and itching on my trunk which is new. My ultrasound and CT scans came out okay but the doctor can't really tell if I am better or worse. Makes me wonder what the benefit of all those tests are. My biopsy came in at stage 3 but the doctor say I have cirrhosis. It's all a bunch of crap as far as I can tell. I am 66 years old. My doctor says the oldest he ever did was a man 72 years old and he was a machine. I am definitely not a machine. I felt like death was coming for me after the biopsy so I am pretty sure a transplant would kill me anyway. My husband is pretty much in denial and is very little help. He thinks I'm fine. He doesn't really understand why I won't drink wine with him . Actually I felt pretty good before the hernia repair except for the anemia it was causing me. Now I'm a mess. How I get through is when I get up in the morning I think God has given me another day and I better do something with it. For some reason that seems to boost my morale. I was diagnosed at a late stage 3 years ago. I find it difficult to listen to he nice little online seminars because someone always says late stage people have trouble stoping the progression. This I find too discouraging and almost makes me crazy and jealous of the happy beautiful people that were diagnosed early and their labs are perfect. There's always someone bragging about that on the Facebook posts. Haha! I want to slap them. I mightbe alittle discouraged myself as this turned into kind of a rant and I apologize for that. My friend Inna says to not even think about the cirrhosis which I try to but an itch comes up and it's hard to forget. BUT if I didn't have an itch I probably could forget about it and then I would probably be pretty happy. She says we have to think we'll be okay. So,maybe go with that. I think we are supposed to be keeping a good eye on our livers so maybe the doctors can do something if we have a problem you know, before our livers give up. So get up in the morning and make as much of your days that you can and remember we were meant to last forever anyway.
Hugs,
Pam
Hi, I am also from the UK and also of an age where if a transplant were needed I doubt I would have it as I am soon to turn into my 70s. Diagnosed in 2006 I did not start to itch until 2014. It took ages for me to see a specialist, first the GP went through a process of trial and error but nothing worked. In the end I booked a private appointment, saw a wonderful chap who then started me on Cholestyramine and put me on his list in the NHS. Over the next 12-18 months we added Naltrexone which did not work for me then Rifampicin which helped and after a while Sertraline was added. It seemed with this cocktail the deep itch which caused me great distress was calmed. When I have a flare I can increase the sertraline to 50mg a day but when the itch is just in the background I manage with 25mg. The itch is still every present, I feel it across the lower half of my face but the deep itch has all but gone. I find when I have some rich food, as one does at Christmas, the itch is greater and ice cream is a total no no nowadays!
I agree with the others that trying to find a way to lessen stress is good, yoga is a great idea but I prefer to walk. I also listen to guided meditation recordings from YouTube for relaxation and for sleep.
Also because of this wonderful hepatologist he referred me to a dermatologist (GP was dismissive about my complaint) who has discovered that I have another auto immune condition and was zinc deficient.
Sometimes we have to look further than PBC to find the balance for our bodies.
I hope that you can find something that works for you and go into your 60s to enjoy a bit of retirement.
best wishes
Thanks for the interesting story. Yes, drugs need to be trialled and balanced. I've had no formal diagnosis yet...but all points to pbc and probably Sjogrens too. My Gp wont start any strong drugs til I see Hepatology, fair enough. You need the experts but I try Fexofenadine. Not really that helpful, but I think the placebo effect helps.
Hi Geraldine
I'm so sorry to here that your partner doesn't understand. The itch is unbearable
Have tryed everything .. my consultant has given me Riferden that works perfectly and I've no itch now. And whom said you were old 60 is about 10 years off me and I want to live more than 70.
I hope you find some more support off here. This group gives me so much energy as my family dont understand when I'm tired and worried .
Janine xx
Hi , why do you think you are too old at 60 to have a transplant ? I am 55 & had mine in Nov 2019 due to extreme pirituis & no quality of life , my GPS did their best , my PBC consultant did his best , but nothing helped , my skin turned to leather , I didn't sleep , eat or function well at all , clothes became unbareable against my skin , I was covered in lumps , bruises & scabs , my feet where constantly swollen , all my nails became infected , I suffered constantly from conjunctivitis & oral thrush ( do to sjogrens syndrome) went from arthritis to osteoarthritis, bit D & calcium deficiency became aneamic. Even though I was dealing with all this & amazingly still holding a job down , was mentally & physically exhausted I never stopped fighting for more , so I was referred to St James Liver consultants , I was assessed , I had UVB treatment & plasma exchange for 3 mths they didn't help either , my itching just continued to elevate, I continued to fight , believe me with great difficulty, they became concerned about my mental state , this itch ruled my life ! the only answer was a transplant , I underwent all the assessments & was excepted on the list in Aug 2018 , whilst awaiting for my call I had much need counciling they also fitted a nasel billiary drain to draw out the bile , thisis by no means easy to cope with but it did help whilst being on the list , it is only a short term fix but for the 1st 3 mths at least I got such relief ! I then received my call on the 26th Nov 2019 , I am now over 1 yrs post , my journey wasn't easy but my itch stopped instantly after transplant & although I have had many ups & downs & it has been a completely different battle , I am doing well , for the 15 mths I was on the list I could no longer work I wasn't fit too , but I returned to work in July of this year ! ( I worked in a pharmacy for 10 yrs ) I didn't return to the pharmacy I have a new job , I work from home & always will as a PA for a chairlift company, my life has totally changed , I feel alive again !! I was lucky enough to find someone who would listen , but I had to fight for it , it's yr body , it's yr itch , it's yr life , you have to make people listen ! I battled many consultants , I wanted to live not exist ! never give up , never stop fighting, make yr husband listen , make him come to appointments , my family are amazing, but believe me they didn't get it at 1st or understand , I was diagnosed with PBC 10 yrs ago , but I made them listen , I involved them , I stopped suffering in silence & they got there , they got it & I have to say esp the last 3 yrs I couldn't have done it without them , my partner too was like yr husband , to other people it's just an itch , but he got there , ignorance was bliss to him but I was having none of it & with perseverance & Leeds Liver Transplant Unit he finally understood & became my rock .
I feel yr pain , I will never forget it & I hope you get what you deserve as much support as possible but mostly the help you need , Never stop fighting my fellow warrior xxx
Thank you for all your encouragement. It's good to read on others,' difficult journey. Congratulations on doing well after transplant. Ill bear it in mind when I'm seeing my Consultant.
So sorry you are going through all this. As a fellow PBCer I hope it might help you to know that I know people in our PBC community who have been in stage 3 or 4 for decades. The other thing important for you to know is that many adverse symptoms we experience can be controlled by diet. I also known people in our community who have resolved the itching and other symptoms with a healthy plant based diet. Nearly all chronic diseases are benefitted by eliminating sugar, processed foods, gluten, etc. For me it was very empowering to regain control over this illness by fighting it with everything I have. When the meds didn't work I turned to research which led me to intermittent fasting and the above dietary changes which dramatically reduce inflammation. Now I am completely free of symptoms and my enzymes are normal. The drugs alone didn't accomplish that. A warrior mentality did. Find the fighter in you...it's there. We should never rely on drugs and doctors alone to fight this battle. There is much we can do to help our bodies heal. Good luck!
I'm so glad that diet worked for you , that's amazing ❤ unfortunately for me nothing worked , my diet was good anyway , but my bile ducts where too damaged & nothing can undo that , so my bile just went into my bloodstream all the time , which then crystallized & that is impossible to break down , all they could do was take away the daily bile so it wouldn't get chance to crystallize whilst awaiting my transplant , but it's a short term fix , the nasel tube is very thin & soon blocks with the sticky bile , I had it replaced twice , but it never worked as well as the 1st 3 mths & my liver no longer functioned the same , so other problems began . I hope with all my heart yr itch continues to stay away , I wouldn't wish it on my worst enemy, my body was black & blue & the pain was horrific! Xx
I'm so sorry to hear that. For most, dietary changes do help. There are numerous meds that are tried here in the US to alleviate itch. Most of them appear to improve with Rifampin. Do some research and consult with the UKs version of the national liver foundation, if you haven't already. They should be able to help. Good luck. There has to be something to relieve this for you.
Hi I’m 45 and have pbc and the dreaded ITCH sends me insane , I have good and bad days and when bad it gets me so down . I take powders everyday that are prescribed along with prescribed antihistamine and tried so many creams but on bad days I itch from head to toe and nothing helps I itch till I bleed and bruise . Can’t really help but can totally support way you feel , good luck sherrie x
Hello Geraldine 60,. Everyone who has been diagnosed with PBC can understand and relate to just about everything you’re going through. For you though, not knowing if you have PBC is especially frustrating while you wait. Until you are diagnosed try to keep your mind busy. I would tell you not to think about PBC until you're diagnosed, but I won't because I remember how I was.
With that being said, the only thing that relieved my itching for five years now is Vistaril (hydroxyzine). My Hepatologist prescribed it on my first visit. It works amazingly well for me. I take it at bedtime because it also makes me drowsy and helps me sleep. I very rarely itch anymore, but I will Never forget how miserable the itching was.
I am 64 and was diagnosed by blood tests with PBC along with auto immune hepatitis overlap disease Jan 29, 2015. A liver biopsy showed I had cirrhosis (Stage 3-4/4) decompensated liver disease. My hepatologist started me on Ursodiol and hydroxyzine/Vistaril for my primary biliary cholangitis. He also prescribed a immuno suppressant and Prednisone for my auto immune hepatitis. Then I started reading everything I could get my hands on from reputable websites. I am a nurse and so I wanted to understand exactly how it all worked. My PBC had to have started back in my early 30s if not late 20s for me to have stage 3 to 4 liver cirrhosis. I had always been tired as long as I can remember, but I always pushed on because I thought that was normal. I was raising three children and working full-time, and even went to nursing school at age 50! It's been a rough 5 years. I gained a lot of weight due to being on Prednisone for 3 yrs as had a hard time weaning off Prednisone. I had Weight loss surgery a year ago and have lost half my body weight. I was taken off all insulin, high blood pressure medicine, hi cholesterol medicine, and water retention medication the day of my surgery and am healthier than I have ever been. Plus my liver function tests are almost normal!
SO here’s my advice if you have with PBC.
Don't panic, see a hepatologist that is knowledgeable on PBC and other autoimmune liver diseases, Medications are a lifesaver as they will slow the progression down if not stop the progression. But from my experience of talking with other PBC patients, when they try to go off their meds their numbers go high again in most cases. Eat healthy, the best diet for my liver is High protein, low carb, low-fat. It reminds me of the Mediterranean diet. Exercise when you are able. I am terrible about doing exercise, so I’ve had to find something that I enjoy and try to do it whenever I’m not too fatigued. don’t lose touch with close friends, as some people with PBC tend to isolate themselves from friends, as I did. in my case, I think my fatigue has kept me from being as social as I once was. But I’ve been working on those relationships again on Facebook or by phone because of this crazy pandemic. Try to have positive people around you that give support and understanding.
The good news is there are meds for your itching, and to slow PBC down. However, the fatigue will always be a factor you'll have to work around. In fact I had to go on disability in 2017 due to Fatigue and osteoarthritis.
Lastly, my hepatologist tells me that I should live a long and normal life as long as I take care of myself and I’m good to my body. That means I take my medications, I have a ultrasound of my liver every three months to make sure I don’t have liver cancer, I have Blood work done every three months, I see my hepatologist every six months, a bone density test every year to gauge my osteopenia from liver disease, and I have a whole lot of other specialists that I see regularly for other things I have related to my liver disease. I hope this has helped your understanding of this crazy disease. Just know that they have come a long way in liver treatment and can help you live a fairly normal life.
Hang in there Geraldine, and I wish you the very best.
Thank you Kim Renee for all that nice encouraging information. I will post when I know my formal diagnosis, and like yourself, they think there may be more than one thing, such as Sjogrens' Syndrome, along with the PBC. All the best for 2021 to you and yours. Best regards, Geraldine
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