Do I Have Liver Disease??

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misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 8/8/2007 5:55 PM (GMT -6)   
My doctor called me last night and told me that i should raise my prednisone dosage because I have elevated liver enzymes and I need to see a hepatologist and might possibly need a liver biopsy.
Does anyone have lupus with liver involvement and what does this mean exactly? How does it affect your body etc. and is there anything i can do to help my liver out??
Im scared!! I really hope I dont have liver disease as well since I already have antiphospholipid antibodies and kidney involvement among other things...
I have a liver ultrasound on wednesday to determine whether or not i need a biopsy....i would appreciate anyone's knowledge on this subject! thanks guys!

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2552
   Posted 8/8/2007 6:46 PM (GMT -6)   
Misscali, I don't know anything about lupus with liver involvement but I know there are others here who do and I'm sure they'll check in with you. I'm sorry you have to wait until next Wednesday to have your ultrasound, and I especially hope you don't need to have a liver biopsy. I'll sure be thinking about you between now and then and hope that increasing your prednisone doesn't have any negative side effects.

Hang in there, and take care.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 8/8/2007 9:01 PM (GMT -6)   
Hi misscali--
I have a very bad liver and its good that your doctor is being so protective of you. This is important. The main problem is that the meds we take are so bad on your liver, and there is the possibility that there may be some autoimmune stuff involved as well. As far as I know autoimmune hepatitis (inflammation of the liver) is something plain old blood work should uncover, damage to your liver from other causes might be harder to determine. Many people have elevated liver enzymes and many docs don't even bother to tell their patients, assuming it is liver damage from the meds, but the meds can't be discontinued, so they figure moot point. You can go a long, long long time with elevated enzymes and inflammation to your liver before any permanent damage occurs. I have warded off cirrhosis and don't even have fibrosis (damage) just fatty liver and I've been through a lot. I have had fibrosis in the past but it healed. The liver heals itself and the liver enzyme ALT is not a measure of how much your liver is damaged but a sign that the liver is repairing itself (which means there must be some damage to repair). When I was really sick, my ALTs dropped tremendously and my liver didn't repair for a while, then got better.

I believe that the antiphospholipid antibodies has something to due with AI hep or some form of liver problem. You might want to check the web. Also, the hepatitis forum here is really good.

On the liver biopsy side, it hurts and you can't be knocked out and there is risk involved. Normally, they will only do it if absolutely necessary. These are some things my doc told me I can do to improve your liver:

1. Take only meds you need. If you take pain meds as needed take them only when you need them. NSAIDS, antiinflammatory drugs and psychiatric drugs are very hard on the liver, in general, but there are other older drugs that work better. If its a choice between being on a mild narcotic vs. killing my liver, I choose the narcotic, even if it means I am in more pain. A good doc and/or hepatologist should go through all your meds and strip them down to determine if a certain drug isn't causing the problem and replacing it with another or taking it by injection or another method that bypasses the liver in part. I can take estrogen in a patch, but am allergic to the pills. I take as many meds as I can in patch or non-pill form. I also take the lowest dose I can take and have it still work.

2. Lose weight if you are overweight. I know this is near impossible, especially if you have liver problems, but I talk extensively with my hepatologist, who gives me diets or recommends one to me. Sometimes this is trial and error, depending on how your liver is functioning. When I cross the line from overweight to obese on the weight chart, my liver enzymes shoot up high and just get worse and worse until I lose the weight. I've been taken off meds that cause me to gain weight because of the effect of the weight on my liver.

3. Avoid things that cause you allergies or that you are sensitive to.

4. Know which drugs are metabolized (broken down) by your liver.

5. Get your blood insulin checked and check for diabetes--diabetes really effects the liver when untreated. Metabolic syndrome X--prediabetes--causes fatty liver and elevated enzymes.

I think that seeing a hepatologist even just once is good for anyone with a chronic illness on lots of strong medication, just to go over your meds and make sure that you are on the least damaging types of meds and for diet info. Liver problems are scary because you don't know you have them and then bang, your labs are out of whack. But many people have bad labs and some people have "benign" elevations in liver enzymes due to certain medicines. An ultrasound with the pregnancy ultrasound thing can tell a doc a lot more about the condition of your liver and some other organs. It can tell fatty liver from cirrhosis from normal or inflamed tissue. It is pretty accurate because the tissue vibrates at a different rate depending on whether it is like shoe leather (cirrhosis), fatty (like mine), normal or inflamed.

My dad is seventy and has had elevated enzymes since his thirties due to an inherited metabolic disorder and diabetes. I have the same thing and other complications. My dad has mild cirrohsis but is very active, on no meds for it, is very together mentally, very healthy for his age and many people with just horrible livers that are bad alcoholics live to be very very old. The liver is pretty forgiving and just keeps healing, at least for a while. It is a real drag that you might be having problems, hopefully just some adjustments in medications, maybe lower dosages or different ones and maybe a diet will help you out. I pray that you don't have some form of liver disease, including ai liver disease, but if something like that is wrong, it can be treated and you can live a normal life. For people with hepatitis C acute, it takes something like 20 years to develop problems. I'm glad your doc cares about your liver, it is the single most important organ because it processes all the meds you take to help with your AI disease. Liver disease is slow progressing, has few symptoms, gets bad then heals, goes into remission for long periods of time, and is just a pain, another problem, but usually isn't something that gets real bad real fast. Try not to worry about it too much. I hope that you don't need a biopsy, that the ultrasound doesn't show anything bad, and that maybe just some med changes or diet or something is all you need. Please let us know what happens. You are in my thoughts and prayers.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 8/8/2007 9:50 PM (GMT -6)   
Hey Marji! I can't tell you how much better your reply made me feel :) My doctor already tested me for Helpatitis and the results came back negative which is good. Is a liver biopsy anything like a kidney biopsy? I had a kidney biopsy almost a year ago right before they failed leaving me on dialysis for a month. My doctor said my liver enzymes were 2x normal and there really is no need to worry until they are about 3x normal but she is being extra cautious. I really love the medical system in Pittsburgh because they are very thorough and cautious.

My doctor also mentioned that although the elevated enzymes could be due to my medications (I am taking Cellcept right now) but my previous rheumatologist already lowered my cellcept dosage and my liver enzymes have continued to rise so she suspects that it is probably due to something else.

i really appreciate you're tips on keeping the liver healthy. i think if i have autoimmune hepatitis or not it is good to keep a healthy diet and exercise. I would consider myself a pretty petite person but i have not been exercising as much as i should (or at all haha). Anyways I will surely keep you updated on my ultrasound and all other test that follow! Thanks again!

melloopy1
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/28/2009 7:37 PM (GMT -6)   
confused  just got out of the hospital- sle lupus patient-almost had a heart attack= any way they told me my liver enzymes were high and didnt even think to link it to my lupus now iv been refferred to a gastrointrologist to rule out hep c. i'''d never heard of IM HEP???
to say the least im terrrified my kidneys are in trouble 2.           
 
           LOVE-N-LOYALTY
    MEL-LOOPY1
 

danab
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/29/2009 10:55 AM (GMT -6)   
Misscali, I'm wondering the same thing about myself. I have been sick for about7wks. My ribs even swell, I did have ct & they said everthing looked normal but my labs are all wacked out. I hope you find out some good news!

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2768
   Posted 7/29/2009 12:03 PM (GMT -6)   
Hi Misscali:
 
I'm sorry to hear that your liver enzymes are elevated.  Are you taking methotrexate?  I know that it can cause elevated liver enzymes.  I hope that you do not have liver disease and I hope that your appointment goes well.  I know it's really scary when something new comes up, but try not to get to worked up over it you may put yourself into a flare.  Wait and see what the specialist says.  You'll be in my prayers.  Please take care and let us know how you're doing.
 
Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 7/30/2009 12:46 PM (GMT -6)   
Autoimmune liver disease can mimic or run with autoimmune diseases. A good hepatologist is needed to accurately diagnose you. The good thing about AI liver disease is that it can be put into remission, where some of the infections just go on and on. I hope you are doing okay and the biopsy didn't show anything too troubling. The onset of my fatty liver was very acute and they thougt I was going to die. Ultimately the cause was my endocrine system causng problems with the liver. So many things, esp meds, effect the liver.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/30/2009 6:21 PM (GMT -6)   
I think it's a good idea to follow up and be as careful as possible. Very often when i'm flaring my liver enzymes have been elevated. I've even had swelling and discomfort. I've been screened for all the liver diseases, neg. I've had ultrasounds and stuff too, but it just seems to be a minor problem for me when i'm flaring. I hope yours turns out to be minor!! Judy

fibromama
New Member


Date Joined Jun 2008
Total Posts : 9
   Posted 8/24/2009 12:07 AM (GMT -6)   
cured4real, Your post was the most encouraging I have ever read. I have had elevated liver enzymes for about 15 years. I am 44. I do have celiac disease and they seem to get worse when exposed to gluten. My ALT was recently 86 and shouldn't be higher than 40. I've never had a liver biopsy because it's never gotten 3x the normal.

Do you know anything about celiac disease and elevated liver enzymes. Do they correlate?

My doctor doesn't know why my liver is chronically elevated. I was tested for A,B,C all negative and I haven't had a drink in over 20 years.

I would love any insight you have...it seems as though you know ALOT!!!

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 8/29/2009 12:10 AM (GMT -6)   
fibromama-
My hepatologist tested me for celiac because there is a connection between celiac and certain rare forms of liver disease. It is really hard to find a good hepatologist. Many people now have or are getting NAFLD (non-alcoholic fatty liver disease) which can only be diagnosed through a liver biopsy or even better, an ultrasound of the liver. Often this condition is called "Fatty liver" or "diabetic liver" if you have diabetes with it. If you have elevated liver enzymes along with fatty liver then they call it NASH (non-alcoholic steatohepatitis--steato means fat) and this is the worst form. It can lead to cirrhosis and then end stage liver disease.

The docs have only recently gotten it through their thick skulls that NASH is fairly serious, and many dont know that there are drugs that can treat it and keep you from dying from it. In a recent study of 85 liver cancer patients, a large number had fatty liver alone with no significant fibrosis (scarring--like cirrhosis). So now they Know that the fat alone is a real problem (I could have told them that). Treatment for me is taking Metformin, a diabetes pill medication. It lowers my enzymes to normal and stablizes my mild high/low blood sugar and lowers my high blood pressure. It has kept my dad alive healthy and with normal enzymes for thirty years.

One of the most common causes are endocrine problems. It can also be hereditary if you have lots of diabetes in your family, esp if you have Native American blood, at all. Docs think obesity causes it but you likely had itbefore the obesity, I did, and it caused the obesity. Losing weight does not improve the liver, I have lost it, though it does help other things. The problem is that I cannot metabolize fats and cholesterol and it is hereditary. The onset of endocrine problems triggered the condition in me. I have likely never really metabolized fats or carbohydrates well. Diet is important. Low fat diets caused the fastest increase of fat in my liver because my body thought it was starved of fats and stored more than the usual excessive amount. A moderate "healthy" fat diet with very few carbs and lean healthy meats and veggies was prescribed for me.

YOu can be skinny with fatty liver, the fat is in the liver, that's what causes the problem. I would go to a big modern medical center and see a good hepatologist there. Borland-Groover in Jacksonville tested my blood insulin and tsted me for all the really rare stuff, and then dxed me with prediabetes, I had the NASH dx and then recommended the Metformin or Actos, and a cholesterol drug as high cholesterol can play a role.

THis can be a serious condition that docs try to push off on diet and exercise. There is medicinal treatement and since it is virtually impossible to lose weight with NASH, the medicine is crucial. There are many many weird obscure forms of liver problems and you really need to see a hepatologist, not just a gi guy. I know this from experience, was misdiagnosedand nearly killed by the wrong treatment.

Take care and let me know what happens. Even if your ALT isn't 3 x normal, it doesn't mean that you don't have significant, even end stage liver disease because when the liver gets damaged, it is not able to produce the enzymes anymore, and you will have perfectly normal, low normal even liver function tests. This is one of the biggest problems with liver disease so its important to get referred while they are still elevated. I have been living with this for 17 years with no guarantees of living much longer than 20 with what's wrong with me-- I have other liver problems.

The ultrasound is the first thing to get, it will tell if its NASH, then they will hopefully know enough to know there is treatment. Metformin works well for me.
If they see stuff on the ultrasound, they can run other tests or biopsy, and the biopsy has significant risk so you don't want one unless you really need it. I've had four and they don't want to poke more holes in mine.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 8/29/2009 12:13 AM (GMT -6)   
Oh BTW, when my liver disease was the worst and I was the sickest from it, my ALT was 0 and that is when I got my fibrosis (scarring). ALT is an enzyme that is produced when the liver repairs itself. When it can no longer do that, it is very low.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


kristi40
New Member


Date Joined Jun 2012
Total Posts : 1
   Posted 7/2/2012 8:29 PM (GMT -6)   
I have been diagnosed with lupus I also have 2 types of arthritis and fibromyalgia and several other things. I was just told my liver wasn't working correctly that it was spitting stuff back out into my stomach which is causing a lot of bile to build up. I'm getting my gall bladder removed soon and going for more testing because my food is not disgusting properly causing me not to have bowel movements. Which the last time was on June 22nd. They are giving me medication to try and get things moving because they think everything is shutting down. I endure pain every single day and I'm already on pain medication. Which by no means is helping with my pain. I have lost over 20 pounds less then 2 weeks and I'm very weak. My eyes are getting worse and I have blood in my urine which before finding out I had lupus they have no idea where the blood is coming from so now they think it's from the lupus as well. I'm scared to death cause it has been 2 years since I got sick and only got worse! Can anyone tell me what I need to do or ask my doctors so I can get to feeling better?! I have recently became a grandma 2 months ago and my son and his wife are having twins in August! I want to enjoy being a grandma so I can spoil them rotten but at this point I can't even open a bottle of drink without it feeling like I'm breaking my wrist! Please someone help me cope with this or tell me what I can do. Thank You!!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12161
   Posted 7/2/2012 10:52 PM (GMT -6)   
I'm sorry you're having a hard time right now. I hope the doctor's find out what's going on with you.

What medications are you on?
Joy
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