Have AIH....liver hurts, feels swollen?

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nasalady
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Date Joined Sep 2009
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   Posted 1/11/2010 1:48 AM (GMT -7)   
My liver enzymes were great last October when I saw my hepatologist. I don't know what's going on....I have been taking new meds though, including Cymbalta.

Should I wait until February or make an appt to see him sooner?

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/11/2010 1:06 PM (GMT -7)   

I was always told to call if there were any problems prior to the next appt.  So it would be a good idea for you to call and try to get an earlier appt.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/11/2010 1:23 PM (GMT -7)   
Thanks Connie.....I'm going to try to see him this week if possible.

(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/11/2010 1:24 PM (GMT -7)   

Good luck, JoAnn, and be sure to let us know the outcome of your visit/labs, etc.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/13/2010 9:44 AM (GMT -7)   
Hi again,

Well, as it turns out, I ended up in the ER Monday night. I was there for many hours and they ran all sorts of tests on me. Everything was negative. So they can't explain my pain; in fact the only visible sign that something odd is going on is that my abdomen is very distended.

So they've admitted me to the hospital (surgical unit) to keep an eye on me. The pain remains concentrated in the right upper quadrant and radiates to the right shoulder. Morphine only helps a little.

I would have thought it was my gallbladder except that my gallbadder was removed in 1992.

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/13/2010 9:49:03 AM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/13/2010 7:58 PM (GMT -7)   

JoAnn, I'm so sorry you are still in pain.  I hope they find out what is going on. 

Thanks for keeping us updated.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 1/14/2010 4:46 PM (GMT -7)   

JoAnn,

Sorry to hear you're in the hospital and the pain hasn't gone.  Here's something I found online:

"Pain After Surgery: A few people have new or recurring episodes of pain that feel like gallbladder attacks even though the gallbladder (and the stones) have been removed. The cause is not known, but it may be malfunction of the sphincter of Oddi, the muscles that control the release of bile and pancreatic secretions through the opening of the bile and pancreatic ducts into the small intestine. Pain may occur because pressure in the ducts is increased by sphincter spasms, which hinders the flow of bile and pancreatic secretions. Pain also may result from small gallstones that remain in the ducts after the gallbladder is removed. More commonly, the cause is another problem, such as irritable bowel syndrome or even peptic ulcer disease.

Endoscopic retrograde cholangiopancreatography (ERCP) may be necessary to determine if the cause of pain is increased pressure. For this procedure, a flexible viewing tube (endoscope) is inserted through the mouth and into the intestine, and a device to measure pressure is inserted through the tube. If pressure is increased, surgical instruments are inserted into the tube and used to cut and thus widen the sphincter of Oddi. This procedure (called endoscopic sphincterotomy) can relieve symptoms in people who have an abnormality of the sphincter."

So maybe it's something like that?
 
I hope it gets better real soon,
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/14/2010 6:06 PM (GMT -7)   
JoAnn My sister had her gallbladder removed many years ago, actually my siblings and 2 of three children also. Anyway my sister still suffers from same pain and symptoms, come to find out after having an ERCP at Mass General they discovered she still gets small stones in her bile duck which usually passes after some discomfort, they did remove a small one thatt didnt pass which caused the pain to continue. She has had the procedure done only 2x to remove a stone, other than that they seem to pass on their own.... just a thought
sue
When I started counting my blessings my whole world turned around.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/14/2010 7:24 PM (GMT -7)   
Thanks everyone for kind wishes and great info and suggestions!

Fortunately, I'm back home now....still have pain, but it's a little better now.

The doctors at the hospital never did decide what my problem was/is. A CT scan, ultrasound, and various blood tests were all negative. I had already mentioned the possibility of a stone stuck in a bile duct in the liver (like what happened to Sue's sister) to the doctors, but they didn't see one in there. I'd never heard of the other issue in the paragraphs posted by Dany (malfunction of the sphincter of Oddi), but that sounds like something that wouldn't show up on an ultrasound or CT scan.

One of the doctors (when he was releasing me from the hospital) mentioned that it could be something called "capsulitis" which is somewhat rare but another of those things that you can't necessarily test for. The capsule is the outer "skin" of the liver, which can become irritated or inflamed for a variety of reasons, including stretching due to distention or swelling of the liver. He said that any type of pain in this general region has a tendency to radiate to the right shoulder...?

I do have an appt to see my hepatologist in the morning, so will let you know what he thinks.

(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/14/2010 8:33 PM (GMT -7)   

Thanks for the update, JoAnn!  Glad you are home.  Be sure to let us know what the hepatologist says!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/15/2010 1:36 PM (GMT -7)   
Hi again, everyone,

I did see my hepatologist this morning, who agreed with the possible capsulitis theory. He said that sphincter of Oddi malfunction was another possibility, but since all of my bloodwork was normal it was less likely (I guess some of the liver panel tests are usually a bit abnormal in case of a sphincter malfunction?).

In any case since I'm feeling MUCH better today, he agreed that there was really nothing further to be done at this time. I've stopped taking the morphine sulfate tablets given to me by the discharging doctor at the hospital because I don't need them any longer, thank goodness!!

I do have another pending issue that may affect the health of my liver, which I did discuss with the doctor this morning. I think I will start another thread for this issue, though.

Take care....thanks for all of your inputs!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/15/2010 2:29 PM (GMT -7)   

JoAnn, I'm so glad that you are feeling better and no longer need the pain meds!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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