liver difficulties and ct image changes?

Hi you all. I just want to say again how thankful this board is here. On days when I feel lost and alone I am so thankful that I can come here. So I am looking for anyone who might have a similar experience to me. I was diagnosed in April, but we still are trying to get to the bottom of things. I suspect that I have had this for years and actually suspect I had it growing up. I have several joint deformations and have struggled since puberty with health. Anyway I had high liver enzymes on and off for several years.At the onset of this flare I had a
small kidney stone block my ureter back up my kidney. That has let to one heck of a spiral. I have had a complete lifestyle change since I was diagnosed and
many things have improved but the inflammation and exhaustion still remain. I will have a liver biopsy in two weeks b /c I continue yo have high enzymes and pain.As well as my CT scan shows changes. I just wondered if there was anyone out there with liver involvement or Ai liver disease. I am willing to to what ever it takes for now no doctor will touch me. I cant take any meds b /c the liver absorbs so much, and I feel like we are waisting precious time. I do have an appointment with a specialist at Duke in Aug and am trying to get in to see another.. Thanks for any advice...
andfr

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The anticentromere antibodies can cause liver cirrhosis, but generally the other scleroderma antibodies don't seem to affect the liver, usually. So if you don't have the anticentromere antibodies (have they done an ELISA anticentromere B test?) then I hope they have done blood testing to rule out hepatitis virus.

Scleroderma can cause renal crisis but a search of pubmed.org indicates that there is no particular association between kidney stones and scleroderma. So it sounds like you have more than just scleroderma going on here - as if you didn't already have enough! Maybe one of your medications is causing the stones. What are you taking?

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I've had some liver involvement, but it hasn't been very problematic. My liver enzymes had been a little bit high for years, then went up a little more, and the doctor finally decided to do a liver biopsy. That showed that I had autoimmune hepatitis, stage I. It wasn't symptomatic and didn't require any treatment beyond a little extra caution about what drugs I take. Then the enzymes went up a little more -- another biopsy, same conclusion, but from a different doctor. Who strongly recommended that I take the herb milk thistle, as it has been shown to protect the liver. So I did. Two years later, my liver enzymes are nearly normal, so it actually seems to be doing some good. So ask your doctor about milk thistle.

The liver biopsy is not a big deal. If they're going to use a contrast agent, make sure they know about your prior kidney problems. Some contrast agents shouldn't be used if you have kidney disease. I don't know if that would apply in your case, but just make sure they know your history. (You never want to hear a doctor say, "Why didn't you tell me that?")

Hang in there, and good luck. Sounds like you're on the right track to start getting treated effectively.

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Thanks for the shared info. Milk thistle?? Where do you find that and how do you take it. Would love to hear more.

Also, anyone know about sclera specialists in Iowa?? Or in Seattle? Thx so much. CM

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First of you all thank you guys!

Daisy Do yes my anticentomere B was >8 my internist along with my symptoms right away identified it as sclero. We ruled out Hepatitis and they said they thought it was Cirohsis/fatty liver. It changed over several months on CT scans despite cleaning my system out of drugs and changing my diet. It was also during a major flare though as well that landed me in the hospital for a week. My spleen changed as well, so I was thinking taht might be tissue growth.
the only meds I am on are gi MEds. they wonn't let me take anything else due to the fact that my enzymes have been so high :/ My Kidney stuff has been borderline. I like to teeter on the edge :) I also don't like to follow the rules either. I saw atht you don't have much skin involvement. I don't either, except I am starting to develop the dots everywhere and I have changes in my mouth ( My gums are receeding and esophagus is tightening) This has been a roller coaster. I have been out of work since February ( I am a special Ed teacher) and wonder if I will ever get back..

bedlam ensued- Thank you for your imput. My internist said that she though the sheath to the liver was swollen and so that is why I hurt? Who knows? Thankfully I am having the biopsy when I will be asleep for a partial hysterectomy, I am relieved to know though that it should be no issue...

I am trying to absorb all I can to help.
THANK YOU ALL!

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Jen,

I am new to this site, but want to wish you much good luck with your upcoming surgery and biopsy.

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Jen,

First of all, good luck! I just wanted to let you know that you are not alone. I also had elevated liver enzymes and was sent for a biopsy. My results came back positive for Autoimmune Hepatitis and Stage 1 Primary Biliary Cirrhosis. These results were predicted with positive blood tests other than liver function tests (AMA and Anti-Smooth). If you haven't has those tests done yet, they could possibly save you from a biopsy for diagnosis, although still necessary to stage. The biopsy really wasn't as bad as I had imagined though, so if you do need it I am sure you will do just fine. My Rheumatologist wants me to take AP therapy for the Scleroderna but my Hepatologist nixed that due to taxing the liver. As I understand the liver disease is not caused by Scleroderma, but there is sometimes a correlation between the two. Anyways, best of luck and please feel free to ask me anything as it seems we are going through similar situations. Wish you the best!

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Oh goodness just typed a response and lost it. Kselibrary Thnak you! Best of luck to you...

JEhago.
Were you having the Liver issues before or after your diagnosis of Scleroderma? Did you have a CT scan? thank you os much for your response. sometimes though I wish no one wouldhav eto go through this it is good to know you are not alone.... I am so ready to feel better....

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I have had elevated ALT and AST on and off for 6 years now, and I have diffuse systemic scleroderma. I also have hypothyroid, a fair-sized nodule on the thyroid, raynauds, sjogrens, and who knows what else - LOL.

Any time that my liver enzymes are high, we re-test in 6-8 weeks, and I drink plenty of water, take milk thistle, as well as tumeric, and drink de-tox herbal tea, and my enzymes are right where they need to be, every time.

I still get very nervous when they reach such an elevated level, but so far (fingers crossed) they have always come back to normal.

I've known about the health benefits of milk thistle for the liver for many many years, but unfortunately, I am on so many medications, that I have no desire to take another herb or vitamin, or pill, unless it is absolutely necessary, and from time to time it has been necessary.

I am glad others have suggested the milk thistle as well. I also will not have so much as a sip of wine, or a baby aspirin during this time, as well.

I wish you well, and hope these suggestions help you.

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This is a fascinating discussion for me. thanks everyone, for sharing; I am scheduled for blood tests next week and am scared to death about liver results because for several years they have been high. I am anxious to try milk thistle. Can anyone tell me please how to find this? Is it in most drug stores and over the counter or at a natural foods store? Thanks so much. CM

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You can find milk thistle in most pharmacies, and stores like Wal-Mart even carry it. I order mine on-line from The Vitamin Shoppe, as I do not have one near me where I currently live. Any health food store would carry this as well.

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Jen,

The diagnosis of Scleroderma came one month later, but that is just the way the doctors made me do it. I went to the doctor's with symptoms of Raynaud's and extreme muscle aches/fatigue. Because of the the Raynaud's they ran autoimmune tests, but it was at this time my liver function test were elevated. I saw three Rheumatologists, but none of them wanted to help me until I saw a Hepatologist to have the liver thing sorted out. It was only after the biopsy and diagnosis of AIH and PBC did my Rheumatologist mention Scleroderma. I didn't have a CT scan, but they did send me for a Ultrasound (forgive me if these are the same things, I don't know for certain the difference). They were looking for two things: to see if they could find any visual differences im my organs such as size and also to see if there were gallstones or any other blockage. After all of that came back fine, my doctor further pushed for the biopsy. Yes, for certain, you are not alone. I was only diagnosed a month ago and have been overwhelmed byt the amount of support I have received on these types of message boards. Please feel free to reach out for any reason. All of us are special, but none of us are alone.

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Gailbro-
Thank you so much :) I have not been allowed to take very many meds b/c of the liver stuff. I am hoping that the general surgeon who will be in my hysterectomy on Thursday really can get a good look in there. Any other information he could give us would be so helpful. My enzymes have been up and odwn for the last several years, as well as several other things. Howvwer they have dismisse dthem until the last year and a half when they continue dto climb and my liver started to hurt. I got all new doctors and the newer doctors have taken it more seriously. I can't wait to try the milk thistle I can't take it befor emy surgery but Iw ill look into it as soon as I am done with everything.

Jehago-
I am recently diagnosed as well. I have only known about the Scleroderma since April. It was a total accident we found out even. Although I see it as a blessing. I had a very bad flare that hospitalized me and they started pumping me with estrogen and well it was bad... However we got through and have answers. I am still nailing down solid doctors. I too get stressed at times with how overwhelming this is. I suspect I have had sclero since after having my son. In the last few years I have ha dmultiple stomach and organ issues. Now they kind of all make sense. We are all here for each otehr. It is how we get through an dI feel very blessed...

Okay so for anyone here do you have pain in the area of your liver?

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