One Patient's Positive Perspectives

High liver enzymes can be a result of lupus...

High liver enzymes can be a result of lupus, and my rheumatologist said some of this is not uncommon in lupus patients.  Although it is uncommon, lupus can also attack a patient’s liver, causing a more pronounced elevation in liver enzymes, such as ASTs and ALTs.  When this happened to me, my symptoms included pervasive malaise, nausea, itching, and worsening of my overall health and lupus activity.

My family doctor was persistent in finding an answer, and wouldn’t let my rheumatologist rest until they found one.  They consulted and referred me to a gastroenterologist.  Many tests were completed to determine if perhaps my chemo drugs (methotrexate or imuran) were the culprit, or perhaps infection such as hepatitis.  Imuran is sometimes used to treat liver involvement in lupus, but I was already taking it!

When everything else was ruled out, the specialist determined that lupus was indeed damaging my liver.  In my situation, it ended up being a mixed blessing.  I had to stop taking the chemotherapy drugs that were contraindicated with liver problems that somewhat had been controlling my CNS lupus symptoms.  Steroids were used as a short-term intervention, and I became a candidate for a phase III clinical trial of rituxan.

Monitor liver enzymes closely...

Lupus patients with elevated liver enzymes should keep in close touch with their doctors and continue to follow up with recommended lab work.  My doctor monitored my liver enzymes closely for over a year, since alternately they would appear normal, but elevated the next time.  When levels stopped returning to normal, my doctor thought it wasn’t just normal lupus activity.  

Two rituxan infusions put me into a near 5-year remission, stopped the lupus attack on my liver, and controlled many of my most severe lupus problems.  My ALTs and ASTs have been normal ever since, and I was able to cut my lupus medications back to just the basics – plaquenil, low dose maintenance steroids and folic acid.  

Although now the long-lasting near remission is ending, some new rituxan infusions may be in the works.  However, liver enzymes have still been behaving nicely so far.

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Comments on: "Lupus and elevated liver enzymes…" (9)

  1. […] 3. Lupus and elevated liver enzymes… – February 8, 2011 – 3,818 views (#2 all-time) […]

  2. hello. my mother has lupus. she has had it for about 15 years now. she has taken everything you have talked about and more. her liver is now under attack. it flared up and was enlarged. she was put on high doses of prednisone. it finally went back within normal range. now again her atls are high. i am now researching everything. i am finding out that my mom has kept me in a bubble. i went to her for all the answers and she hasnt flat out lied, but she hasnt told me the honest truth either. i know she is dying. i have offered her to take some of my liver. she told me shes not going to take it becuase it wouldnt be right. but i think now that its more because they wont give her a transplant. her lupus will just attack the new liver. i dont really know what to do. i know she still has some time. i also know this is the begining of the end. she is now being referred to a gastrolontologist and an immunologist. among other ologists. its confusing. why wasnt she seen by all of these specialists when her liver flared the first time. its like the doctors are following the breadcrumbs that are her lupus. i am going to talk to her about the Benlysta infusions, i guess that will be her next drug. i hope anyway; it seems to be working for you.

    • Leah, thank you so much for visiting Lupus Adventures and sharing your comment. I am sorry to hear about your mother’s lupus, and especially the challenge she faces with liver involvement. It is a good thing that she is getting to see a gastroenterologist about her liver, they are the one’s who specialize in liver treatment. I didn’t understand the connection at first, but the liver produces and releases bile directly into the small intestine during meals, and some also collects in the gall bladder for release later, a little lower in the small intestine, if needed. The way that lupus organ involvement is treated is to treat the lupus, not the symptoms of the organ malfunction. Unless the tissue damage in her liver is irreversible, controlling her lupus will likely control the liver problems. Prednisone or another steroid drug is usually the first, treatment, but other stronger suppressant drugs are used to stop organ damaging lupus.

      I would encourage you not to lose hope or make assumptions about her lupus/liver involvement. It may not be as bad as you fear. If her lupus can be controlled, and the inflammation in her liver from lupus stopped, her liver might be able to heal itself. It may depend on the extent of damage in the liver. Mine healed after the lupus was finally under control. That was almost eight years ago, and my liver enzymes (ALTs and ASTs) have remained normal ever since. I recently read an excellent article about how the liver can grow new tissue.

      I understand that if the inflammation of lupus in the liver is not controlled, then the inflammation can cause eventual scarring of fibrosis and the un-scarred portions continue to work (harder). Even with fibrosis there is good possibility the liver will heal itself. Only if the scarring gets so bad it becomes cirrhosis, then the damage is irreversible. My husband came with me to my rheumatologist on a couple of occasions, and it eased his concerns to hear answers to his questions from my doctor. The American Liver Foundation has a good discussion you might want to read at http://www.liverfoundation.org/abouttheliver/info/progression/ and the Lupus Foundation of America at http://www.lupus.org/answers/entry/gastrointestinal-system-and-lupus.

      I would like to recommend you talk to your mom, and let her know you want to understand her lupus better, and that you are worried about losing her. You might want to ask her if you can go along with her to an appointment with her rheumatologist and/or gastroenterologist. Tell her that you want to have the doctor explain the likely outcome of your mom’s present lupus condition. Because of federal HIPAA laws, she will have to tell the doctor she wants you there, and that it is okay to talk freely in front of you about her health condition. Her doctor will know if he/she expects you mom’s liver will have a possibility of healing.

      My best wishes to you and your mom. If I can be a help with any other lupus questions, please feel free to drop a comment or email me at lupusadventurer@cox.net. LA

  3. teaching4kids_ga@yahoo.com said:

    Hi, I was wondering what are your liver numbers? I recently had an ALT with Labcorp that was 56 normal being 0-32, my vitamin D was critically low and I am on 50,000 IUD X2 for 4 weeks. I just want answers and not meds, needless to say I was on predisone for joint pain by my PCP until I could be seen by a rheumy that just believes I need to loose some weight and come back in 4 weeks for a recheck. I totally know that it is not the weight because when I weighed more my levels were normal. HELP!! Thoughts?

    • T4K: I do not honestly remember the numbers because after Rituxan the liver involvement went into remission and did not re-flare (so far, thankfully.) However, the ALT and AST levels were elevated for over a year when my family doctor insisted that we look into it more. At that time I was on Methotrexate, Imuran, Plaquenil and Prednisone when the liver problem developed and would not resolve. At the same time, my malaise was extreme with nausea that lasted for hours each day, and intense brain fog since my CNS involvement was also in major unabated flare. I was on the previous med combo for almost ten years when it quit controlling my lupus.

      My Rheumy and PCP sent me to a gastroenterologist who tested me for everything from jaundice to jungle fever to rule out all other possible causes of liver problems, and concluded that lupus was indeed attacking my liver. The liver toxic chemo was then contraindicated, and the Imuran that is often used to treat lupus liver involvement obviously was not helping me. Then, I had Rituxan infusions in a clinical trial that put the liver activity into complete remission.

      It has now been about 7 years since and I have been on Benlysta infusions for two years. No more sign of elevated liver levels at all. Lupus yes, liver no. If it helps, I have gained about 20 pounds since then, and that has not affected my liver function adversely. I am even in the process of a slow attempt to get off the prednisone completely. Lowering the daily dose once each month by 1/2 mg, I am now at 4mg and ready to go to 3.5 on November 1st.

      I hope this helps… LA

  4. i have lupus and on plenquil but what about folic do i need it to

    • Pam:

      My doctor didn’t start me on folic acid until I was on methotrexate that I took for 10 years. Ask your doctor about it, and he will know what to recommend.

      Thank you so much for stopping at Lupus Adventures and taking the time to leave your comment and question.

      Have a great day. LA

  5. WOW….you just made me feel better! I’m newly diagnosed with Lupus (March 2011), on Plaquenil for 12 wks, 20 mg’s Prednisone and Folic. ALT and AST were over 200’s back then and now steady in the 50’s which is great but still high. Been worseemeried about the liver and will be setting up an appt for GI Spec’s, but while waiting your comment eased my mind. My Rheumo seemed concerned they are still high.

    • Donna: You may see over the next few weeks and months that the Plaquenil begins to take control of a great deal of your lupus symptoms. This drug takes time to accumulate in the body enough to have an effect. Nearly every lupus and rheumatoid arthritis patient is started on Plaquenil before other drugs, and most of us continue to take it all our lives. It is a very good antimalarial drug that has been used widely since World War II, when they discovered lupus patients with malaria had remission of their lupus symptoms while taking it for malaria. It is derived from natural quinine, like what is found in citrus rinds, and modified to be less toxic to the retina, etc. Than pure quinine. Its side effects are well known and generally minimal. Hoping you do well under the care of a good rheumy! Have a great day! LA

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