It you are diagnosed with fatty Liver/Nash do everything possible to stop it from progressing to Cirrhosis, I have End Stage Cirrhosis, Portal Hypertension, Hepatic Encephalopathy. I inherited this, be careful of medicines taken especially anything with Tylenol. I was on statins for a long time when Liver test came back high I would be taken off and when test came back normal I was put back on them. This is a Horrible Disease and if caught in time may save you from Cirrhosis.
Stoping NASH/ Fatty Liver before Cirr... - Living with Fatty...
Stoping NASH/ Fatty Liver before Cirrhosis.
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Hnybny33
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thanks so much for the post Hnybny33 - this community is all about sharing good advice with eachother, especially when it come from experience as in your case. What would you have done differently to prevent your FLD/NASH from progressing to Cirrhosis?
If I had known I wouldn't have taken the Lipitor or Crestor, also having been in serval wrecks having fractures in back I was taking vicodan in order to work the Tylenol is horrible on the Liver. I would have eaten heathlier anything needed to prevent this. I tell everyone Love Your Liver, it does so many things and we cannot live without it! This is a horrible way to die......
Lipitor is bad for your liver? My doctor prescribed me lipitor for my high cholesterol its 30 pills a month for 3 months im barely in my second month i was also diagnosed with non alcoholic fatty liver, what do you know about lipitor medication? Why was lipitor prescribed to you? And how long did you take lipitor for?
I was hospitalized this year an they said I had a liver disease its so hard to deal with an I know how you feel, my meds caused this an it hits you real hard. we must enjoy what life we have, thank you for sharing
If i had known what was wrong i would have watched my diabetes and cholesterol better, got more exercise and lost weight.
Ohhhh Tylenol that’s what I’ve been taking for the pain even Emergency room discharged me when dehydrated says no nsaids only 600mg Tylenol I’ve been taking all weekend headache pain !someone told me that also ,good lord
Tamadol is all I take
So sorry to hear what you are going through and amazing that you were prescribed these products over such a long time without anyone realizing the damage being done. I wonder if people with regular prescriptions of powerful medicines should receive intermittent liver scans to check that permanent damage is not being done?
Yes they definitely should! My friend takes vicodan and began having pain she went to my Liver Doctor and found she has 20% fatty Liver. My Son is 19 and has inherited this he is a EMT, works out daily has perfect BMI and won't even take a Tylenol yet still has this. My other advice if anyone in your family has Liver issues please push the Doctors to stay on top of this. I went 10 years before finding out I had this and if I hadn't had those drinks at concert I may not have discovered this until a vein busted and I hemmoriaged to death, which happened to one of my friends Father.
I'm being treated at VCU in VA. My Doctor is A End Of Life Liver Doctor. I'm participating in a Clinical Trial for Portal Hypertension. I was bumped from a trial for something that may reduce the Cirrhosis due to developing Hepetic Encepholothy. The toxins have a hard time being filtered by a diseased Liver and Amonia goes to my brain causing me to speak like someone from a foreign country, at times I forget where I'm going or how to get there. It's very scary but has gotten better since I was prescribed Rifaxiam and Lacutose. I also have episodes of itching all over. I hope this info may help someone with this disease.
I find your post very interesting and enlightening especially when you are going through so much. You are an inspiration, thinking of others at this time.
May I ask when you first noticed the symptoms of forgetfulness?
The forgetfulness started slowly, I was blaming it on getting older. The H.E. hit me hard, I speak like someone from a foreign country My Doctor noted also A Childlike manner, I would get unsteady and get very confused. I'm told my eyes stay very large also. The Rifaxiam and Lacutose helps So much! Also when I get any infection the H.E. comes back. I had a tooth pulled no dentist would see me because of the trial medicine thins my blood, so I had to have extracted at Hospital. I now have Dry Socket. I have 12 days left on this Clinical Trial.
Thank you! You seem very coherent in your writing with clarity of thought, does the cognitive impairment come and go according to your level of toxicity?
Yes, I am OK now but having issues with insurance covering Rifaxiam, I have been without for 5 days, I've been taking more Lacutose and Praying my mind stays clear until it goes through at least. I have never had to go to ER die to HE. Many people experience much worse symptoms then I do and if one has it continually especially for a year or longer often go into a Comma and Others Die. The complications associated with Cirrhosis often take people before the Liver fails.
I really appreciate your honesty in talking about such a horrendous disease. Others will learn to understand from your lived experience which is something no doctor, book or Mr Google can teach. For this I thank you and wish you well as you travel along your rocky road. May you always have an angel by your side to guide you.
Take care!
Fight the indurance . your Dr
will go to bat. I take this drug and they send it free every month. Get your Dr. involved.
I was getting it from company for a year until my Disability went through and now have Medicaid and company denied my application.
I have a genetic version of Cirrhosis that requires a transplant but haven't been able to get on the list at VCU in Richmond, Va because of having a heart value replaced a year ago which is doing fine. They say my prio history, high risk and age of 71 prevents them from approving me for the list. Rather take my chances on the op table but can't get there yet. Talking with Duke medical now about their willingness to transplant. In the mean time ammonia build up on the brain has landed me in the ER twice this year. Taking Lacatose and xifaxan now. The latter is expensive and an insurance problem on coverage. Its a horrible disease for sure and haven't found a solution yet. Anyone else you know had the ammonia problem with Chirrhosis of the liver?
Hello, I have been encouraged to look into Duke, My Encepholothy is better with the Rifaxiam and Lacutose, The manufacturer will supply free Rifaxiam if you meet income guidelines and show proof insurance isn't helping you get it. I went through the ringer with insurance company in order to get mine. VCU has strick guidelines involving transplants, I was told they won't do partial Liver implants that the disease would take over the healthy liver in about 5 years. I'm doing Clinical Trials now and feel I will die not from Liver failure but some condition caused by this Disease. I Pray You Find A Hospital that will assist you. Keep on top of insurance to get your meds they help me so much.
Yes i have those same meds too. I was stable until they found a cyst on ultra sound.
Wondering what happens next??
I know how you must feel, I get scanned every 3 months because there is a high risk of Liver Cancer, it would bump you up on transplant list but I've been researching and found the anti rejection meds cause cancer also. My last scan showed inconclusive. I fear I will die from one of the complications from Cirrohos before the Liver shuts down. I Pray for the Very Best Outcome For You, Please keep me updated as we seem to be in the same boat.
Your story sounds like mine. I have cirrohsis, h.e.,low platelets61000. Itchy skin. sores that won't go away
A person with compensated cirrhosis can live a long time, however, nobody can predict when decompensation (ascites, bleeding varices, etc.) will occur. Have you checked out any clinical trials? Don't stop taking care of yourself. There are some promising treatments out there.
Yes, they have mentioned one coming up that is susposidly reverse the damage. I have 12 more days on trial I'm on for portal Hypertension then another pressure test. The trial meds make me so sick starts about an hour after taking the 5 pills.
Agreed...im always looking
VCU in VA. Is running alot of trials for Liver and was waiting for me when I walked into the office, when I asked my trial nurse if they have the 7 people needed for trial I'm on she said No at this point only me and 1 other. I'm doing phase 2 after this they will be looking for people to do phase 3 and hopefully medicine will be on market by 2018. I have a question does your H.E. cause you to stay awake all night and sleep during the day? Also are you experiencing pain? Being a training hospital my Doctors say you cannot have pain from Liver. Well that's how I discovered this to begin with! Everyone is not a textbook case. My primary tells me half of his patients experience pain with Liver Disease he said every Doctor has a different opinion. At times it feels like I'm being stabbed in Liver and Spleen I'm not sure it those orgen being swollen may cause the pain?
I get pain too. A lot like pregnancy when the baby is a awkward position. YEP it feels like they are being pushed around. Comes and goes misery when I'm bloated which is almost always.
I believe the swelling causes the pain, you are a blessing helping others who are going threw all the things you have, keep positive an stay on the sunny side of life
I'm currently doing a clinical trial for Portal Hypertension, and there are several more they have mentioned, no ascites yet but Hepetic Encepholothy for a year now currently taking refexam and lactulose for H.E., Doctors considering shunt after next MRI.
I take both of those too. Going for a HE evaluation in October. GOOD LUCK!
You too keep me posted. I'm having scan and evaluation for shunt in October.
This is great advice and a real wake up call for some.
Take care in your journey, the road you are travelling is not easy.
God bless you
X
If i had known years ago that there was any problems with my liver i would have been able to try to do something about it. My blood work always came back normal and still does. I have diabetes and if i had known there was a problem i would have watched my diabetes better. If you have problems watch your diet cholesterol if diabetic keep close eye on A1C. I was diagnosed with cjrrhosis 6 yrs ago. It can be reversed if caught in time.
They are doing Clinical Trails for medicine to reverse Cirrohos, was not able to participate because I developed Hepetic Encepholothy. Cirrohos can be slowed down with weight loss, proper diet ect. But it cannot be reversed. Some hospitals will do partial transplant, my hospital won't. Doctor said the diseased part of Liver will spread to healthy new Liver, this transplant may extend life by 5 years.
Completed first Clinical Trial, No change in Portal Pressure Medicine made me very sick and lowered my heart rate from high 90s to between 70-80. Have been offered another trial more risk and can cause cirrhosis to worsen. Had MRI today waiting on results if any sign of Cancer or need of Shunt which I learned will worsen my Encepholothy, which could cause me to go into coma. Unsure of what to do, will have to wait for MRI results.
Received letter from Doctor, MRI showed no tumors or Masses at this time. I have appt. at Liver Clinic on the 16th. I was told by my Primary a shunt will worsen my Encepholothy, which seems to be getting worse. The trial being offered is for Portal Hypertension, the side effects is cancer in Monkeys and Rats and will worsen my Cirrhosis. It's phase 3. I really don't know what to do, take Trial and have higher risk of cancer and worsening of Cirrhosis or have shunt which will worsen my Encepholothy and when toxins get to high you will go in and out of Comas and eventually die. Life expectancy for H.E. is one year.
Hnybny33 what condition did you inherit? Curious.
My biological father died in his early 40s from Cirrohos he was a heavy drinker. I am 52 and do not drink. My Son is 19 and his AST blood work is as high as mine. My Doctor tells me I have the Liver of an alcoholic yet I do not drink. I feel the predisposition of getting Liver Disease was inherited.
The predisposition of Liver Disease. My father died in his early 40s he was a drinker (I was adopted) he had no idea he had Liver problems. I am 52 and do not drink yet have full blown Cirrohos, which Fatty Liver did play a part in as well as the medicine I took for so many years. I have 2 Children, My oldest is 33 with no Liver Problems thus far. My youngest is 19 and his Liver Blood work AST is very high.
Sorry your going through this. I am 33 my dr suspects NASH, i did drink alot in college but stopped. I have mildly elevated liver enzymes. I am on prozac. I dont drink anymore other then an occassional holiday/birthday drink. I am fit I work out but I have a nagging pain under my right breast. My ultrasound showed nothing I had a repeat one done 10 months later. I i am trying to just save my liver from getting worse. I hope the prozac isnt going to turn this into cirroshis
I am now on Prozac because I was always crying. No one really knows what medication can do to ones body, but I'm certain Tylenol played a role in my disease, continue to stay fit and keep a watch on your Liver. Has your Doctor mentioned a fibroscan? I wish you the best. I will be starting another Clinical Trial Soon for a medicine that help portal Hypertension and possibly can reverse the Cirrohos.
Have the same but not told it is end stage.
How long did it take to progress from NASH to cirrhosis?
Did statins cause injury to your liver?
My Doctor said for it to be as bad as it is it took 10 years, I don't drink but have the Liver of an alcoholic. That was 3 years ago. I was on Lipitor and Crestor for many years my blood work would come back high and I would be taken off of meds until I tested normal. I was also on metformin for over 10 years for pre-diabetes. I was taken off all statins when diagnosed with Cirrhosis.
Started New Clinical Trial Today, signed papers, did blood work, had fibroscan which showed 30% fatty liver. Nex Appointments I will have Portal vein pressure test down my juggler, ekg, ultrasound on Liver, Spleen , Gallbladder ect. Breath test and Genetics test, after that I begin taking 2 pills per day. For 24 weeks then another pressure test. They said if they find Medicine working I will be allowed to continue taking an additional 6 months. This trial is in phase 2 and looks to be very promising.
I wish you all the best and feel your pain as I have it too.
Just wondering how the Trial is doing?
Thanks for asking jek19, unfortunately when I had pressure test my number was down to 10. It had to be 12 to continue, they are not sure if pressure is down due to last Clinical Medicine I took was working or why it had came down, I'm glad it's better but wanted to participate in study because I know my Son will be needing this Medicine. So I wait until I'm offered the next one.
That is very good news Hny. Sorry about the trial but death may lie on the side of increasing pressures. It doesn't make you well, of course, but encouraging.
I’m wondering how you are doing now Hnybny33? I hope You are having some improvements.
What is the medication called that's promising???
Recent ultrasound showed 2 growths one on left side of Liver, One on right. I'm scheduled for MRI in October. I began taking fluid pills, I lost 12 lbs in 5 days. I'm getting sores on my legs and arms. Nausea is very bad. My teeth are being affected by the osteropenia, I cannot start Fosamax fusions until I no longer require dental work. My teeth are Breaking and falling out. My MELD score went down 1 point, the doctors do not know why but told me to keep fighting, which I will do. I'm Thankful for Every day and have been enjoying my life and surrounding myself with positive people. I've recently went on a cruise to the Bahamas, I did OK except had horrible leg cramps to and from flight to Florida.
So sorry to hear that. I have fatty liver and stage 2 fibrosis. Im trying to loose weight and am eating better. I hope its not too late for me.
How are you doing hnybny? 💚
They want to put on a statin now as well as metformin. Did it help you? Any side effects?
I was taken off statins and metformin when diagnosed. I had MRI and they saw no sign of lesions they have been watching apparently a Miracle, I will take it! Now have lumps in lymp knods, Will have scans tomorrow. Im trying to enjoy life, Family and Friends to the fullest. I know it only takes 1 office visit or phone call to totally change your life. Pain in Liver area and spleen at times are horrible. Fighting with every fiber of my being....
How's your condition been since?
If I have Nash do think I can stop it.
I'm so sorry to hear this. Prayers to you 🙏 Thank you for sharing and giving us advice. I'm on a statement as well and when I come off of it it is way too high over 300 so I have no choice but to be on it I'm not on a high dose but hearing your story is very scary my my liver and sons are normal now where I actually am except for what's been done with blood work blood work I have 0 fibrosis from the blood test and Nash is stage one Very mild But I have staged 3 fatty liver but these tests were done in January and I have lost 45 pounds since then
I know this last post was several years ago, any updates?
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