Author Topic: Liver Disease in Primary Sjogren's Syndrome?  (Read 7648 times)

Woolygimp

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Liver Disease in Primary Sjogren's Syndrome?
« on: December 01, 2011, 11:34:57 PM »
I seem to have made a lot of progress in the last few weeks.  My rheumatologist suspects that I have Lupus, a connective tissue disease, or systemic autoimmune processes of unknown etiology and has gotten me into Mayo for a full workup to identify which organs are involved and which disease it may be.   I have an appointment set a couple weeks from now.

I suggested that it is probably primary Sjogrens, since I have the hallmark dryness, but he's of the opinion that Sjogren's doesn't cause these other problems and that it's possible that I have another disease with Sjogren's being secondary... and I didn't want to argue semantics with him being that him finally coming around to the fact that I may have some serious autoimmune issues, while remaining seronegative, seems like a battle won.   When he first saw me he said that I looked healthy and there was no way I was sick.  Hopefully Mayo provides the answers I need and I can finally find out which disease and which organs are involved.

I wanted to ask to see if any of you guy have any degree of liver dysfunction.  I ask because I've been experiencing a worsening of certain symptoms, symptoms that don't respond to prednisone, and symptoms that literally read off like a laundry list for encelopathy.  In the nine years of having Sjogren's symptoms, I've never been scared that any of them would be fatal.  These new symptoms are scaring the crap out of me... 

Here's what I've observed.

They seem to have worsened with use of (prescribed) acetometaphine/hydrocodone based painkillers and marijuana, both of which I've stopped.  Both of these are known to be hepatotoxic.

They worsen when I eat, especially high protein meals. 

I feel much better at night and can barely remain awake during the day. 

Four years ago, I had extremely elevated ALT/AST liver enzymes which normalized after going gluten free.

The symptoms vary in intensity pretty crazily,  I've felt like I was dying and then a few hours later felt normal.  I'll feel very bad and then a couple hours later feel like I'm completely fine.

The symptoms are:

Breathlessness (especially after eating), weakness, fatigue (more so than usual), excessive sleepiness following meals, dizziness, confusion, altered brain function (this is a big one, I literally feel like my brain is struggling), difficulty communicating, finding words, temporary visual disturbances, reversed day-night cycle (had this one for a while), loss of memory, bruising, and a few others.  I haven't noticed any jaundice or yellowing of the skin.  It feels like my brain is the most affected and these symptoms are mostly mental. 

That said,  I feel completely fine right now.  It makes me forget exactly how horrible I've felt over the last couple of weeks... at times.  I read:

http://en.wikipedia.org/wiki/Hepatic_encephalopathy
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC128830/

And I'm also being tested for a urea cycle disorder, before my trip to Mayo, which can elevate ammonia levels and cause these symptoms.  The worsening after eating seems like a big, big sign to me and can be indicative of liver disease or urea cycle disorders.

Does anyone here have liver disease with Sjogrens?  Are there treatments for it? Seems like most of the immunosuppressants may also be hepatotoxic.   

I think I'm noticing an improvement after discontinuing everything but the essential medications and stopping all painkillers, but I'm not sure yet.  I never took more than 800mg of acetometaphine a day - normal people only develop liver disease at doses higher than 8,000mg/24 hours. Can Sjogren's cause liver dysfunction where the liver just isn't as capable at cleaning the blood?

A lot of these symptoms I've noticed for a very long, long, long time.   They've just become much more distinct and noticeable recently.    I basically just want some reassurances because three weeks is still a lot of time when you suspect something like this may be going on.  I don't know if I should call up my Drs. and ask to get some tests done to find out what's going on before I go to Mayo...

I can deal with damage to glands but when everything I'm going through matches up so perfectly with encephelopathy, which means my brain is being affected, then it becomes a lot more scary! I don't know whether I should call my Dr. up and ask for an emergency Mayo consult or a referral to a liver specialist, or even a second opinion.   I really didn't mention any of these things in my last appointment with him because I was so happy he finally started to admit that I may have extra-glandular involvement...  that I didn't want him to think I was a hypochondriac because I have so many complaints.  I feel a lot worse than I look.

My main concern is that liver dysfunction would exclude me from a lot of potential treatments such as methotrexate!
Btw, thanks for reading this wall of text! You guys are great.
« Last Edit: December 01, 2011, 11:58:11 PM by Woolygimp »

mshistory

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Re: Liver Disease in Primary Sjogren's Syndrome?
« Reply #1 on: December 02, 2011, 04:39:13 AM »
I have the excessive sleepiness after meals too - if you get an answer on that one, I would love to know!

There is a liver disease very closely linked to SjS called primary biliary cirrhosis. So yes, SjS can definitely involve the liver, kidneys, lungs, intestinal tract, etc.

Best of luck with your upcoming appointments.
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

A66eyroad

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Re: Liver Disease in Primary Sjogren's Syndrome?
« Reply #2 on: December 02, 2011, 05:51:45 AM »
((((((Woolygimp)))))) How scary all this is. I hope you get some answers from Mayo and also from all your friends here.

My first mother-in-law has Sj along with some liver dysfunction, Reynaud's and lupus. I don't think they've ever thought the liver stuff was related to the Sj, though, so this is very interesting to me. I do know that there's a lot of medicines she can't take, Tylenol being one of them. (I bet she's never tried medical marijuana, though!  ::) )

Please keep us in the loop as you negotiate these shark-infested waters!

Praying for you & sending positive energy your way.
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.