I have struggled with this disease for over ten years. Now, at age 69 additional issues are coming into play. Rather than complain I have a specific question. Having recently and quite suddenly seen my Liver enzymes continue to rise I am wondering if any of you good people in here have had this issue. I have been a very moderate consumer of alcohol and live a very healthy lifestyle. Tested negative for Hepatitis. However, the GI Doctor is continuing to test me. Any input is most appreciated.
Best to all,
Rcristal
It seems like someone just posted the same question as this.???? I don't have elevated liver enzymes but they always check them as I have a problem with my colon that also involves excess bile acid. The thing with the liver is that it is a secreting gland and it secretes bile which is then stored in the gallbladder and helps digest food...especially fatty foods.
The Sjogrens can attack the liver and cause inflammation which can affect the liver function and cause liver problems You need to ask you doctor what he is testing for and why so you can keep abreast of his search. The longer we have the Sjogrens I swear the body has more and more things crop up. Good Luck. Irish
I had elevated liver enzymes when I was taking iron supplements. Have you added anything like that to your meds?
Liz D.
Thanks for your responses. I have stopped all vitamins and supplements. Our lifestyle and nutrition are very good. This is confusing to us. The only thing I can think of is that I began taking the Heart medicine, Repatha about six weeks ago. According to the Docs this is not a side effect. If not then it is a heck of a coincidence lol.
Rcristal
Some doctors don't know that the Sjogrens can involve the liver, pancreas, colon lungs and any other organ that secretes. This can also include the glands in the brain, the thyroid, etc. Irish
I always check with the NIH.
Check this:
https://www.ncbi.nlm.nih.gov/pubmed/?term=Sjogrens+and+The+Liver (https://www.ncbi.nlm.nih.gov/pubmed/?term=Sjogrens+and+The+Liver)
https://www.ncbi.nlm.nih.gov/pubmed/?term=Sjogrens+Syndrome+Liver
[url=https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=Sjogrens+Syndrome+with+Liver+involvement&btnG=]]https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=Sjogrens+Syndrome+with+Liver+involvement&btnG=] (http://[/url)
Regards to everyone
Well, I just received my recent blood test results. Liver enzymes continue to rise and we do not have a reason. It has even become somewhat painful.
As one of you indicated, Sjogrens just keeps on giving lol.
Best to all,
Rcristal
Are you in a flare and has your doc checked your inflammation blood work. Might be of interest. Sjogrens can cause inflammation in the liver which can screw up the blood work. Irish
Well, now I am getting concerned. The liver pain is getting rough and enzymes are increasing. Not at a dangerous level as of now but steadily increasing. Yet another blood test and MRI Monday. Eleven needles in three+ weeks. Wonder if one can become addicted to blood work lol.
Yesterday I found out that my Neuropathy is getting worse as well. Trying to maintain a pleasant attitude but this is getting old.
The best treatment appears to be walking, laying down and with my old cats and reading.
Rcristal
Have they ruled out any hepatitis? This can be transferred like any other infectious disease that is transferred by bodily secretions. Have you got any yellowing of skin or whites of the eyes. If you are not getting answers you many be whose to ask for a second opinion. I assume you are seeing your internist or gastrointestinal doc. Infectious disease might be seen also. I don't know if you have traveled out of the country or been come place where you could pick up a parasite, etc. Good luck. Irish
Much thanks for your thoughts.
Yes, I tested negative for Hepatitis. The GI Doc, Rheumatologist and Neurologist are sticking me non stop lol. Most, not all, autoimmune/Liver tests are good. However, enzymes are up, B6 way too high, Neuropathy worse, Compliment 3 extremely low. Liver pain and naseau are nasty and so on. MANY tests are normal. In other words, there is an overlap between gastric issues, Rhematlogy and Neurology.
I just live having an autoimmune illness haha. But my attitude remains good.
Best to everyone here who is dealing with an illness.
Rcristal
Have they checked for lupus? There are many tests for that but double stranded DNA is one that is done a lot. Glad your attitude is good cause a person needs a good attitude when so many trips to the doc are necessary. Irish
As a follow-up, I am continuing to be monitored for severe Liver pain and stomach discomfort. My enzymes are up but seem to have leveled off. I have a two week follow up blood test Monday. According to the GI Doctor the enzymes are not high enough to be causing this much pain. Additionally, an ultra sound, and MRI showed nothing abnormal. So far there is no indication of Cancer.
The only Doctor who seems to understand what I am going through is my long time Rheumatologist who has helped me with Sjogrens for a decade. You name it and I have been tested for it lol. Everything from Rocky Mountain Spotted Fever to Hepatitis to Mononucleosis to all sorts of exotic diseases. In the past month I have had a CT Scan, MRI, Ultrasound and 13 needles. I am waiting on results of a test for possible autoimmune involvement in this pain.
I am wondering if the Heart medicine Repatha, which I injected a few times has brought all of this on. I do not believe in coincidence. Of course I am no longer on it.
So I am told that enzymes are a bit high, multiple tests show a normal Liver yet I am in a lot of pain. Probably headed for a biopsy. Just wondering if anyone here has had a similar experience.
Much thank,
Rcristal
The last thing that I can suggest is to see gastrointestinal or maybe a new doctor of some kind. When docs reach the point of "I don't know" I have always felt that it was time to ask for a referral. "I don't know" can occasionally occasionally be serious and then it can be just "live with it" stuff. Also, I would assume that a person could have autoimmune inflammation without showing any positive blood work for a autoimmune disease of the liver.
I have a problem that shows no elevated blood work but it involves the liver, bile, gallbladder. Symptoms of stomach pain, bloating with horrible diarrhea off and on. My GI doc diagnosed me.
Say, are you on Metformin for diabetes??? That can cause liver issues plus problems with B12 I think. Just a thought!!!Many people have to quit metformin because of GI problems. I thought my GI issues were from metformin at first but it is what I eat that drives my issue. There is an issue called Bile Acid diarrhea. If you read articles on that it shows several other liver GI issues that are involved. They just keep finding new problems. Can't even blame stuff on "old age" anymore.
Thanks for the response. I have been off of everything for weeks while they continue blood tests. This includes vitamins and supplements as well.
My Rheumatologist is aggressively looking at possible autoimmune involvement. This includes sending me to see an autoimmune Liver specialist at one of the local University hospitals. This should be in the next couple of weeks. In addition, I am expecting a biopsy soon.
I still wonder about the Repatha.
Rcristal
Sorry for my bugging you..I am concerned. It does sound like your doc is taking good care of you. Im not familiar with the drug of which you speak. You may very well have hit the nail on the head!!! Irish
How can they tell if certain issues are caused by auto immune illness? How would they treat you differently if it is a sjogrens caused issue?
For instance, I've had a heart attack and I have kidney disease. I've always asked my drs. if they think they are from sjogrens, and they say probably not.
They would have to do some blood testing of certain blood markers that are significant in heart disease and the kidney disease plus kidney biopsies.
The heart is known to be involved at times with Sjogrens. We have had a few women who have had cardiologist diagnose them with heart issues related to
Sjogrens. These issues are usually the electrical system that is affected.
One lady had so much trouble and ended up with a pacemaker and a defibrillator. Generally these heart issues are regarded as a neuropathy disturbance from Sjogrens. In other words, the heart is sending bad electrical signals and triggers really crazy beats. This same lady had a heart rate in mid 200's one time. It took docs a while to figure her problems out as they are not common.
The kidneys can be affected but the regular blood work usually will give the hint that there is something amiss. The way I understand it, kidneys in Sjogrens have different problems than lupus kidneys do. Also, heart attacks generally show some issues with the circulation in the major vessels. When we have circulation issues in the heart vessels it is very common to have it affect the vessels in the kidneys also. This is just the little bit that I have learned from people coming to this site. I guess at this stage of the game you could ask some questions to satisfy your curiosity. It may help you with decisions regarding your treatment also. Good luck to you. Irish
How interesting! Thanks for the response Irish. It gives me something to think about for sure. I think my drs. are plain lazy about investigating the possible sjogrens connection.
I received results from my latest blood test. While my Liver enzymes remain high they are continuing to come down. Again, it appears more than a little coincidental that they went up when I started on " Repatha" for my Heart and are slowly coming down since I discontinued taking it.
I am continuing to experience constant right side pain and discomfort. I am having an Endoscopy next week and we will continue to monitor enzymes.
Best to all,
Rcristal
Still thinking of you. Irish
The GI Doc is doing an Endoscopy tomorrow morning. I have been waiting patiently for two weeks. As I previously said, my Liver enzymes remain high but have continued to come down. The Doc said that he sees nothing on the ultrasound or MRI that indicates pain. The reality is that I have been in constant discomfort, pain and naseau. Again, perhaps " Repatha" caused this. Of course I am a bit anxious to hear the results.
As always, Sjogrens may be the culprit. After being relatively steady for a few years I have been in a tough flare for about six months. My terrific, long time Rheumatologist is sending me to visit with a Bilary/autoimmune specialist at a major medical site in a few weeks.
I really hope and trust that each of you are managing. I am pleased to have found this site.
Rcristal
Im thinking of you. Your rheumy is, indeed, a keeper. He is making the right moves to get you treatment. Good luck. Irish
Much thanks Irish. On the way in a few minutes.
Actually, my Rheumatologist is a Woman. I might be a 69 year old man but I a much prefer Women Physicians. They actually listen lol. And they are thorough.
Best to everyone,
Rcristal