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Liver Problems / Systemic Scleroderma

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#1 tmgilbertpt


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Posted 28 January 2007 - 02:10 PM

Hello everyone,

I haven't been on this site for awhile. For those who remember me, I am the 30 year old with systemic scleroderma who back in June was diagnosed with autoimmune hepatitis and nearly died. Well I was doing great for about 3 months and then things starting flaring up again. I just got back from a week at the Mayo. The doctors are ordering another liver biospy. They are thinking I may have primary biliary cirrhois instead of /or with the autoimmune hepatitis. How one girl could get so lucky I have no idea. Well like everyone else, you hear a new medical diagnosis, immediately get on the web and ready everything you can and then start freaking out. That is where I am at right now, so I decided to stop reading and thought I would put a post out to you guys for any information/advice/support/whatever.
Thanks so much, Tammy

#2 Sweet


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Posted 28 January 2007 - 03:19 PM

Hi Tammy,

I'm so sorry you are going through all of these difficulties. I don't have any personal experience with this, but I wanted to give you a link that may help you. Liver involvement

Please keep your chin up.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 Patty


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Posted 29 January 2007 - 03:18 AM

Hi Tammy,
I was told that I have primary biliary cirrhois, also at one point they thought auto hep, so the dr did a liver biopsy and now I have no idea what is wrong with me. I know after I had the biopsy my rhummy was very very upset that I had it done. She said there was no need for it that my liver numbers were normal for my disease and that the GI should have called her b4 doing it. I guess what I am saying is check with Rhummy b4 you do anything else like a liver biopsy. make sure all your doctors talk to each other. I would hate to see someone else have things like this done for no reason like I did. Its surgery and surgery is something we need to stay away from I feel. Good luck and please let us now what happenes.


If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#4 LisaBulman


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Posted 29 January 2007 - 07:13 AM

Hi Tammy,
What else?! I also have auto immune hep but that as far as it goes. At this time, I don't have any first hand info for you, but I can send some positive thoughts your way. You'll get through this, just like everything else!
Please let us know how you are doing and don't stay away so long next time!

Lisa Bulman
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International Scleroderma Network (ISN)

#5 tmgilbertpt


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Posted 29 January 2007 - 02:43 PM

Thanks for the input. All of my doctors are in agreement that I need the biospy. The nice thing about the Mayo, and the reason why I returned, is that all the doctors do actually talk to one another there. And you don't have to ask them to do this...they just naturally think it is part of their job. One main reason for the liver biospy is to try to discern what is actually going on in order to determine the right course of treatment. If it is primary biliary cirrhois (PBC), this doesn't respond to steroids, like autoimmune hepatitis does. And if it is PBC a biospy will let the doctors stage at what level it is. I meet with my surgeon tomorrow at 9am to discuss getting the biospy done. Thanks for the continued support.

#6 janet905


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Posted 29 January 2007 - 04:19 PM

hi tammy,
it's so strange that I was just thinking about you a few days ago (wondering how you have been) and then you post! sorry you had another flareup.
the liver problems linked to sclero are really serious and scary stuff. I think the doctors are doing the right thing to pinpoint the problem. they also need to have a diagnosis to know which drugs to avoid in the future and like you said, how to treat the problem. are you on any meds now? were you still on pred when the flare started ? just curious. 4 months ago I had a liver problem while on methotrexate ( just a fraction of what you went through back in june) . I ran a fever for 2 weeks, could barely move, was very nauseated, then noticed I was getting jaundiced. I then admitted it was probably not the flu. my rheumatologist ordered bloodwork and my liver enzymes were up in the 400 range ( ALT, alk phos) . I stopped the methotrexate injections , started a low dose of pred. as directed by rheumatologist to help decrease the swelling in my liver. I was really scared. she said it probably wasn't immune-mediated hepatitis because I wasn't sick enough! I felt like I was dying. I can't imagine how much you have suffered through all this.
I just hope they can get you back to normal quickly . keep us posted.