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smooth possible antibody - positive for autoimmune hepa***

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Sjogren's Syndrome
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lgail
New Member
Joined : Oct 2010
Posts : 8
Posted 3/28/2011 8:47 AM (GMT -8)
I recently had a positive result with the smooth muscle antibody which may indicate autoimmune hepatitis. Did anyone have a similar result and/or suffer with chronic hepatitis as a result of Sjogren's. All of my labs plus lip biopsy came back negative but I have many symptoms of Sjogren's and this appears to be another one.

I'd appreciate any info that you have. Seeing a gastro soon.
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lgail
New Member
Joined : Oct 2010
Posts : 8
Posted 3/28/2011 8:48 AM (GMT -8)
Sorry - I meant smooth muscle antibody

lgail
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Lynnwood
Forum Moderator
Joined : May 2005
Posts : 8134
Posted 3/28/2011 9:57 AM (GMT -8)
I haven't heard of a hepatitis / Sjogren's connection, but I have only a minor form of Sjogren's. I hope someone else will come along and be able to help you out -- but this isn't a very active forum.
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dbab
Veteran Member
Joined : Jan 2004
Posts : 4151
Posted 3/29/2011 9:38 AM (GMT -8)
Hi lgail, I have anti-SMA antibodies as well in addition to others but I have secondary Sjogren's with Lupus. Yes, you need to watch for liver involvement with Sjogren's. PBC (primary bilary cirrhosis) or AIH (autoimmune hepatitis) are all manifistations that can come up with Sjogren's Syndrome as extraglandular symptoms.

Another thing you want to have them check for is anti-mitochondrial antibodies which if positive usually make a strong case for PBC or other liver issues.

I did get a workup since my antibodies are positive but the hepatologist said no need to worry at this time because my enzymes are ok and the MRI results came out clean (he said no need for biopsy at this time). He wants to see me to get thoroughly tested every few years in addition to my regular testing (every 3 months) liver enzymes in my CBC panel in case any abnormalities come up.

Have you seen a hepatologist for a baseline exam or for at least a consultation?
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DGinSD
Veteran Member
Joined : Apr 2007
Posts : 851
Posted 4/14/2011 9:46 AM (GMT -8)

lgail,

Have you had your ANA and liver panel checked?  What has your doc said about it?  Have you seen any specialists?  I would definitely look into the AIH (autoimmune hep) side.  If that is what you have then you need to check your LFTs (liver function tests).  It's a fully treatable disease. 

Once you have one autoimmune disease, you are predisposed to acquiring more.  Most people have more than one.  They just don't show up at the same time but you should always be aware of new symptoms and bring them up with your doctors.

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lgail
New Member
Joined : Oct 2010
Posts : 8
Posted 4/15/2011 4:46 PM (GMT -8)
Back in October, I had a positive ANA 1:16. In February it was negative. I have all of the Sicca signs and symptoms but test negative for Sjogren's My liver function tests were normal but the SMA was elevated. The AMA was normal. I am seeing a specialist this week to determine if I need further testing and treatment for autoimmune hepatitis.

Also, I have dysautonomia (POTS). It seems many people with autoimmune issues also have autonomic function problems.

Thanks for responding,

Lgail

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DGinSD
Veteran Member
Joined : Apr 2007
Posts : 851
Posted 4/18/2011 12:10 AM (GMT -8)
Hi Lgail,

Since your positive ANA is so slight and you don't have elevated LFTs, if they do diagnose you with AIH, my guess would be that they won't start you on treatment yet.  There are some who don't need treatment but you do need to be monitored in case your LFTs do get higher.  Then you can avoid liver damage.  I think they would want to keep you off the meds until you really need them.

I just looked up dysautonomia...interesting.  I have excessive thirst, dizziness (I can be sitting in a chair and the room just spins) and orthostatic hypotension.  So maybe lumped together I may be positive for that and I have always thought they are just what's normal for me?  That would explain a lot.  I'll bring it up with my doc the next time I see her.

Let us know what happens with the specialist.

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lgail
New Member
Joined : Oct 2010
Posts : 8
Posted 4/18/2011 1:01 PM (GMT -8)
There is a great forum for dysautonomia on DINET.com. The disorder I have been diagnosed with is called POTS( Postural Orthostatic Tachycardia Syndrome).

Lynne
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PJ555
Regular Member
Joined : Sep 2011
Posts : 79
Posted 10/20/2011 7:59 PM (GMT -8)
Wow I am in the middle of about the same thing as you. I have had an extended illness after a surgery with super bad complications. I have always had auto immune problems so has my family and it is assumed that since I was so critically ill it must have really brought out what ever underlying things I had going on because I have had some of these symptoms for years just not to this degree. Right now though post all of the complications post June 1st surg it was to be routine gallbladder surg but when he got in there it was 4x norm size I had huge hernia that my intestines were knotted around and stones in my appendix. I had been so ill I became severely malnutritioned which wasn't correctly watched dispite my pleas and I ended up in the hosp a total of 22 days in June but the complications have not stopped. I have severe joint pain now mainly in my right hand but now it is going into my left and my knees hurt now too. I still swell quite badly which was one of the reasons I ended up in the hosp so long for a condition called Anasarca due to protein malnutrition my albumin dropped to 1.8 and I was in congestive heart failure it was a mess. My mouth is indescribably dry or something I have very little taste my eyes are dry I am so disoriented most of the time and extremely forgetful. I will be bald within a month or two. I only wish I was exaggerating. I kept telling my docs about my symptoms but for some reason I seemed to only irritate them, like they were mad at me for being in pain and not getting better. In fact for getting worse or getting different pain or symptoms. I asked for an ANA and she rolled her eyes but it came back positive 1:320 then she started paying a little closer attention. All the other tests came back normal but she sent me to a rheum. He is GREAT he did some blood work as I am post gastric bypass 9 years and my malnutrition was 2 days away from killing me and he said it could merely be that I am just still struggling to rebuild but his came back that my vit D is very low only a 15, also my calcium is low and my liver enzymes are elevated. Which my liver enzymes have been elevated for quite some time and I keep asking doctors about it because when nurses go over stuff with you when you go to a hosp they always mention it liver damage to me but I always say not that I know of because no doc has every said anything to me but I have ordered my results before and there is some finding on like ultrasounds and ct scans and stuff. I used to work for the hospital in one of the dr offices. It is really a very ugly sad story but unimportant. Anyway he is checking me for AIH and to see if my parathyroids are ok because I don't have a thyroid anymore I had Hashimotos disease. I have fatigue I can't describe except to say even my organs feel tired most of the time. I can't say how my life has changed. I am supposed to have an endoscopy and colonoscopy next tues to see if there is some sort of leak caused from the surg in June but I am scared and I am TIRED and I don't know if I should have it.
What symptoms do you have of AIH did your doctor think you have it. I am kind of freaked out about it. I don't want to have it but at this point I think I can deal with the diagnosis if I can just start on a cure. I am so worried about being bald. I think I am going to start looking for a wig while I still have some hair so it is not as traumatic for me to go when I am completely bald. I don't know. It is just a nightmare that I want to wake up from and start healing.
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mscrowbar
Veteran Member
Joined : Nov 2010
Posts : 877
Posted 10/24/2011 11:44 AM (GMT -8)
PJ555, I am 9 years post gastric bypass too. And, I too, am suffering from malabsorption issues. But, I am gaining weight. I had been diagnosed with fibro, then B-12 def., then Iron def, then my thyroid was removed and now I am hypothyroid and now I have RA. I really don't think that that is what I really have but it will have to do for now. At least I have a doctor that is willing to 1) treat the symptoms and 2) keep an eye on all my blood work and 3) stay open for other possibilities.

What I cannot understand is how I can be gaining so much weight (and quickly) but be suffering malnourishment at the same time? I asked a gastric doc about getting another procedure done and because of the malabsorption issues they will not do it.

I am not having as severe issues as you are but I wonder if they could be in store for me and if this could be something that is in common with many people several years post gastric bypass?? I think maybe I need to go over a few things with my rheumy that I had not talked about before. Maybe dig deeper into the whys and hows?

I am sorry that you have suffered so much and still are. Its terrible to lose all that weight to be healthier and then realize that you are not, if not worse. (I never had any health issues when I was overweight - they all started several years post.)

take care, please, keep me posted
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