Liver Diseases Support Group: Let’s connect

I'm tagging @cherrycompote @sandyjr @thatguy @sonyahamel @justmike @kbelden0 @parrot53 @mayo99824 @jmadiedo @zenk @aa4 @chinup23 @szelisk @gaylea1 @footballmum @khawki91 @misssuezq @lynjoy2 @rsedlock1958 @jennash7 @jeanne5009 @athenalee @katebw @alexandern @jamesduaiswamy @sandif @mydiamondsx8 @trishwrite1 @rosemarya to get the new Liver Diseases support group started.

You've all mentioned liver symptoms or liver disease previously in yourselves or someone you know, such as cirrhosis, fatty liver disease (MASLD, MASH), hepatitis, primary sclerosing cholangitis (PSC), alcohol-related liver disease, end-stage liver disease, and related conditions.

How are you or your loved one doing with your liver symptoms? If you or someone you know has a diagnosed liver disease, what treatments have you or they had? Do you have any suggestions for new members or pitfalls you'd encourage them to look out for?

I was diagnosed with F3 fibrosis ( via fibro scan for elevated liver enzymes) after three years on Prednisone and a year of methotrexate for Polymyalgia Rheumatica. I was approved for Rezdiffra by Aetna but could not afford the $1000 monthly copay. I stopped eating processed and fast food, red meat, 90 percent of dairy and sugar and white rice/bread/ potatoes. Zero alcohol. In four months I reduced my numbers to high fatty liver without fibrosis and lost 30 pounds. I am 73 and diabetic.

That's awesome! Congrats on your success! I am curious. Do you use zero-sugar soft drinks with aspartame-free sweeteners like sucralose or stevia? I assume you are talking about added sugar to food and drinks. I have F3, borderline F4 fibrosis. I eat only steamed vegetables (often steamed from frozen), fish, some chicken, occasional turkey, and maintain a low-salt regimen. I also indulge in occasional low-sugar jam and apple butter. I am wondering if I should get considerably stricter. My fibrosis status remains stable but not reduced.

I'm 71 years old.
I was mis-diagnosed with AIH and I've been on Prednisone for 7 1/2 years.
I have just stopped taking this dangerous med and I'm experiencing a few side effects.
My liver numbers were somewhat high with my last lab testing.
Not sure what's supposed to happen next.
Mike

I am glad you commented because I had totally forgotten about this and maybe what I am going to share might help someone.
The first indication of something going on with my liver was high liver enzymes. The docs did a number of tests and there was not a consistent diagnosis except that it was low level fibrosis. Then they did a liver biopsy and said it was cirrhosis. I questioned this be cause they analyzed 4 samples that contradicted the past results but only 3 samples had been taken. My doc says this happens.

Go on a couple years and my liver enzymes were high but getting about 25% lower. Then all of the sudden they shot up again (3x normal). I was so disheartened. Oddly enough, I was also having tooth pain after dental work starting at that time. I went to my dentist and he could not identify exactly what was going on. He recommended toothpaste with extra flouride but it did not work. Finally we decided on a root canal because it kept hurting, sensitive to cold, etc. He found that two of the 3 roots were dead and one was really inflamed. When he worked on it my face just exploded with blotches. I looked into what it could be and found that oral infections can really affect your whole body, even your liver. We are still working on the tooth but the roots are now filled in. My liver enzymes are now normal or just slightly (5 points) above normal. If the tooth infection did to my liver what it did to my face, I can see how my liver would be really upset. My dentist doesn't acknowledge the connection. I see my gastro in a week. Most of what I read says there is a very real connection between oral health and liver.

I’m now 57 and had a liver transplant 3.5 years ago. I learned for the first time I had end stage liver disease in March of 2021 with a fluctuating MELD of 28-32 and I had a transplant at MassGen Hospital that October. The cause of my liver failure is thought to be autoimmune and related to my long ago diagnosed ulcerative colitis. I had a terrible time in those months leading to my surgery- the worst part was 4 episodes of hepatic encephalopathy and then I developed mysterious fevers. A high protein- plant based and meat- low salt low fat diet and copious amounts of water helped ease some of this. I also had physical therapy to keep strength and balance. Since my transplant I’ve been well and careful. I currently eat a similar diet but less as my appetite has changed. I’ve had fluctuating liver enzymes but this is easing. I walk most days and go to the gym when weather is bad. Liver disease I’m told is a muscle wasting disease so exercise has been important. I don’t drink alcohol or use Tylenol, or OTC meds, I take my prescriptions like a champ. After a year of terribleness, 15 hospitalizations etc I’m amazed at how peaceful life is and how normal I feel.

I own stevia for baking but only drink coffee, tea and water. No soft drinks - and it's hard! Mary's Gone Crackers crackers replaced chips and roasted or raw nuts are snacks. Sweets are sweet potato, berries or an orange. Exercise is recommended so I took up upright yoga. Walking is supposed to be best. There's a good liver support group on Facebook with personal experiences and recipes. Hang in there!

Thanks for the uplifting information—it's much appreciated. I do use aspartame-free soft drinks, but I may want to consider cutting back and eventually eliminating them entirely. I also drink black coffee and tea. I will look up Mary's Gone Crackers online. I've not heard of that product. Fresh fruit is a part of my dietary regimen. I have a banana in the morning with plain oatmeal and a few strawberries or blackberries.
What is the name of the Facebook liver support group? I am definitely interested. Blessings to you.

My liver enzymes had been elevated since 2007 when I started chemo for breast cancer and doctors said they would monitor the liver enzymes and this went on up until 2022 when I started falling asleep up to 5 times a day and I usually don't sleep so this was unusual for me. I was diagnosed with Autoimmune hepatitis in the beginning of 2024 and by Aug 2024, was started on Azathioprine & Budesonide because I declined Prednisone, I didn't want to gain more weight. After 2 weeks I couldn't stand the pain it was causing me, then they tried me on each medication seperately and a month later same thing happened. Then I was tried on Mercaptopurine and I had the same issue. I suffer from Fibromyalgia and have Hashimoto's and Hypothyroidism. At the moment I am on Cellcept and it seems to be working only issue is it's causing me water retention and have to take Furosemide.

Hi, everyone. I was diagnosed with Primary Biliary Cholangitis (PBC) in 2008. (The C used to be cirrhosis) I’ve been taking URSO (ursodiol) ever since. Was discovered during a routine blood test that included liver enzymes. My alkaline phosphatase was a little over twice what it should’ve been. Was referred to a gastroenterologist and more blood work revealed a positive test for Mitochondrial M2 Antibodies - another indicator for PBC. I had a liver biopsy that was inconclusive, but it was the other factors I mentioned that solidified my diagnosis.
In 2012 I started having pain in my right wrist…fast forward to today and, as of last October, I’ve had 12 surgeries on both hands/wrists/forearms, lots of hardware installed and removed. (Including pics of my most recent x-rays, as I’ve been told they’re unique, at least in my circle of family and friends.) The 3 surgeries on my left wrist have always had at least 3 procedures done every time.
In 2021 I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). When I go to my rheumatologist for follow ups he just asks how I’m doing and says to come back in a year. My gastroenterologist told me he has lots of patients who have hEDS, but that I am the only one who also has PBC. I CAN’T be the only person with both of these. One of my other major issues is with my feet - if I sit for 5 minutes or longer, the tops of my feet are so painful that I can barely walk; sometimes my feet and ankles lock (imagine the Tin Man without oil, haha). It takes a lot of delicate steps to be able to walk halfway normally, usually limping. I saw a podiatrist in March who also diagnosed me with Reynaud’s.
So, my rheumatologist says not to do any exercise other than walking in a swimming pool; no yoga, overstretching, Pilates, weightlifting, walking, etc. My physical therapist, very knowledgeable about hEDS, says this isn’t true and that I should be able to do some of these things. After my surgeries, I’m not to lift anything more than 5 pounds. I’ve also found that things like turning doorknobs, trying to write, using my hands for almost anything really, causes weird sensations where my ulnas are cut as the bones move a bit.
I am sure that many of you are suffering through much worse and my heart goes out to each of you. I’m just wondering if any of you know of any dietary advice for trying to stay in a healthy range while not being able to be very active. Every doc says I’m overweight and I know that this certainly doesn’t help.
Does anyone else put there have both PBC and hEDS? What do you do/eat? I know we’re all different, but suggestions would be greatly appreciated. Thank you and Have a wonderful day!