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Any others with Lupus autoimmune cirrhosis of liver
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Any others with Lupus autoimmune cirrhosis of liver

Hello all,
I just found this website today and feel so fortunate to have found a place of possible support and information.
I was diagnosed one year ago with Lupus ANA 1400, Sjogren's Disease, RA, and Auto Immune Cirrohis of the Liver - caused by Lupus.Throughout my life, I never drank alcohol other than a glass of champagne at the occasional wedding. I can't begin to tell you how people react when you say you have cirrhosis. It is very hard. I also now have stage one kidney disease.
At the time of diagnosis, I was put on 30 mg of Prednisone daily, and two months later 400 mg of Plaquenil was added. For the first four months, everything was wonderful. I felt twenty years younger, had boundless energy and enjoyed my smaller size clothes due to weight loss from before the diagnosis. I thought in time the Prednisone could be lowered and then stopped. It didn't happen that way. In Jan the joint pain and painfull walking came back with a vengance. I have pain in my spine and my liver is very enlarged as is my spleen. I started to gain weight they say from the Pred and Plaquinil, and have gained eighty pounds in six months. I have developed cataracs from the prednisone and Plaquinil. I have a terrible time standing still in one spot, and I too have to sit down many times when I am out. The doctors have not been able to lower the Prednisone below 18mg. When they have tried my ANA goes back up and I literraly cannot walk. My family doesn't understand this because with the exception of the weight, I look normal and try to continue to do everything that is expected of me. I am being referred to the UAB Liver Center in Birmingham Alabama by my rheumatologist. Although I am not a candidate for a liver transplant, they are going to see if possibly I could be treated with Imuran. My problem being, the prednisone keeps my liver from getting worse, but it is destroying my eyes and kidneys.
I was just wondering if their is anyone out there with my same conditions that could give me advice. I have not found anyone with Lupus who also has Cirrhosis.
I am trying to be possitive but I am very affraid of what my future holds.
Thank you from my heart,
Donna
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11 Comments Post a Comment
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Avatar_f_tn
Hi, I too was diagnosed about a year ago with Lupus which caused inflamation (inflammation) of the liver. Rhuemotolgy put me on 200mg of Plaquinil which did ease my joint pain. Only had 1 flare up of pain in  Feb/March this year.
Then after two liver biopies and 3 hospital visits to Gastro, was put on 40mg of prednisolone and then slowly reduced them down to zero over 9 weeks. They also gave me bile salt tablets to try and settle the liver down. Still taking them.
Then in July, put me on Azathioprine but after 4 weeks sent my ALT results up to 474. So, back on 40mg of prednisolone. Started reducing by 5mg now,See gastro specialist in Oct to see where I go from here.
Had eyes tested recently and was told I have cataracts but not to worry about them at the moment!
I fully understand how you must be feeling as the constant 'trial and error' treatment can  be so frustrating. Lupus is such a complex disease and after speaking to other members have reaIised that it may take another year before I am on the right treatment.
Try to stay optimistic and take care.

Deby44
PS know what you mean when people say you look well apart from putting a bit of weight on round your middle. Feel like punching them. Little do they know.
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422425_tn?1307996590
I have autoimmune pancreatitis and that is just about the same thing.  I stuggle with a lot of things due to Lupus.  I have taken Imuran.....and it worked very well.  Remember that it is a chemo drug..so there are some side effects. Talk to your dr and see what he thinks.  It will help you not to take so much prednisone.  I took take that awful drug...but without it I might not be here.  Stay strong!
Pam
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354604_tn?1328555666
Hello Donna, Deby, and Pam ;-) Donna I've found this site to be very helpful also! Have made acquaintance with a few people that have become wonderful advocates through these trials and errors with autoimmune problems! I'm so grateful that 'I only have discoid lupus'; I do have the RA/fatigue/depression symptoms which all ebb and flow as if it were Systemic Lupus though. It's a constant battle field! I've got an abnormality with my liver now too and am hoping it's not putting me at risk to go systemic. But I've got to wonder how my med's are working properly when my liver isn't.
Do the best you can to stay positive Donna ~ you can private message people on MedHelp and can garner support in other ways whenever you need it! I'm really protective of my privacy and think message boards are strange... but I lifted some of my biases and have found some wonderful support and information here! I just want each one of you to know that you're in my thoughts and prayers! Go Girl Power! Hugs ~ Wosh.
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484098_tn?1259531132
Hi to all of you.  I also have Lupus, tho they called mine Subacute Cutaneous Lupus Erythematosis, and I also have Sjogren's, as well as the Autoimmune Hepatitis.  I think my taking the Milk Thistle and L-Carnitine has helped me tremendously, as well as taking most fats out of my diet.  Carbs turn to fat as well in your liver, sugar turns to fat in your liver, and all that fat will cause the swelling, and later Cirrosis (cirrhosis).  So, if you can do it, try to take all the "whites" (pasta, bread, etc)  out of your diet.  Such as any man made/processed foods.  The best thing you can do for your self is to become a raw foodist.  Which means to eat just fruits and vegies and nuts (small amounts of nuts)....never any of it cooked.  Always raw.  Just do the basics to keep it from being difficult.  Eat the banana, the apple, orange, grapes, bell peppers, salad, onions and tomatoes, etc.  WASH ALL FRUITS AND VEGIES VERY WELL as your immune system can't take on any of the germs from it!!!!!!!!

  Don't try to make complicated "dishes" with it.  Unless you get bored with your foods.  But in the beginning it's good to just start with the basics.  It will help the weight come off, will give you a boost of energy and eventually may loosen your joint stiffness.  The plaquenil is known to cause Cataracts and eventual blindness.  I for one don't care if I go blind, as the lights hurt my eyes anyway, and would rather be pain free and moving around than be able to see.  I know that sounds strange, but the pain is soooo bad some times.  With this plaquenil, the pain is 99.9% gone and I am happy finally.  Istill get tired, but not as much, and I still can't go in the sun, and once in a while I seem to have a fever every day around 5 p.m.--- maybe from a full day of work (thank God it's a sit down job).  Each of us is different in our abilities to handle what comes our way, and in our bodies' abilities to deal with the things we consume through eating and the air.  I'm told that giving up fake sugar things will also help illnesses.  Aspartame is a poison to all of us, and we all consume it like crazy.  I don't consume that at all, yet I have diseases, and my husband never stops consuming it, and he's healthy as God.  So, I get frustrated with that.  A friend of mine at work has missed sooooooooo much work due to autoimmune issues, nearly dying several times.... She has now gotten off all aspartame/fake sugar products and is now doing so well that she is off 90% of her medications.  It helped her that much.  She can now be in the sun, whereas before stopping the aspartame products, she received very large blisters from just a few minutes in the sun.   I know none of these suggestions will cure you of your diseases, but it's the best we can do for ourselves.  If we truly want to be able to move around, get into life's enjoyment, we have to go back to natural foods.  Gods gifts to us!!!  We have to do what we can, what WE have control of.  Try it and let me know what you think.  I have tried it, but so far can't stick with it due to my cravings for pasta and pizza.  LOL!  But when I go fully RAW, I feel great!    Anyway, as for the hepatitis, I stopped telling people I had it.  They instantly step away from me like I have the contagious ones, and never believe that I don't drink.  If I mention that I had a beer for a birthday party or something, the look on their face is that of "instant knowledge of my alcoholism".  NOBODY NEEDS TO KNOW EXACTLY WHAT'S WRONG WITH YOU...JUST THAT YOU HAVE AUTOIMMUNE PROBLEMS.  DOn't tell them anything else.  And make it known to your family members and doctors that when you do die, you don't want anyone having the words "She died of Cirrhosis" come out of their mouths.  "Organ failure secondary to Lupus" sounds much better. I have already explained that to my family, and they are very aware of why.  So, hopefully, we won't die till we're 80, as long as it's fun to get to 80 (if it's not fun, I don't want to be here).  But just in case, make it be known to everyone that you DON'T have hepatitis....you have autoimmune diseases that affect your internal and external organs in a baaaad way.  Honesty isn't always the best policy.   And it isn't anyones business!!!!!  They won't even be honest enough to say, "I have gas today, watch out!"  haha!  Good luck.  Let me know how you're doing!
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Avatar_f_tn
Hi there, thanks for the invitation to be friends.

I know exactly what you mean when you tell someone you have autoimmune hepatitis. They stare and think about what to say next. As for the Cirrhosis of the liver, thats an even better one. the look of disgust then appears.
After reading your last post, really has made me think about what I tell people and your right, its none of their business. Why justify your illness to someone who doesn't really understand anyway.

Also, going to have a go at cutting all carbs out. Since I have been on the steriods again, starting to feel quite uncomfortable around the middle. This is the second lot of steriods I have been on since May. Only put about 12 lb on up to now, so not too bad but have felt really bloated. Nighttime being the worst. Feels like stomach is going to explode. Have to lay down flat to get comfortable. Dont eat a lot of sugary things but will check eveything to make sure.

The Plaquinil has worked for me too, only had 1 bad flare up of pain in 9 months, but opticians have said I have cataracts. Dont have to worry about them at the moment!

What are you taking for the hepatitis?
Tried Azathioprine but it failed miserably. Sent ALT results high.
Back to the drawing board for this one in October with gastro.

Anyway, thanks for the good advice. Will let you know how the diet change goes.
Take care and speak to you soon.

Deby44

Debbie x x

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613324_tn?1235235580
I have been seriously considering my diet as a few culprits as to why I am not managing very well. I consume sweetener on a daily basis. I feel it can be toxic to those with weak immune systems..such as I. I am diabetic with hypothyroid disease. I am pleased at this time with my thyroid disease ( funny to say) and feel its being treated now at an optimal level.Although I have to avoid goitrogen foods, sadly..some  of my favorite healthy veggies . http://www.naturalhealthtechniques.com/SpecificDiseases/thyroidbadfoods.htm  Of course I cant eat sugar, certain fruits like oranges and must consume low carbs.
I am glad you have mentioned "white foods" because even when I keep it low carb only consuming very little of the "white foods" I feel sick and my blood sugars soar..I was trying to make the connection..because the other/same amnt  carbs do not cause that. Latley I have been having shortness of breath, flem (phlegm), swelling and am connecting it to the white foods...or food allergy of sorts ( will be tested thurs).
Its hard because Im in my 30s and my friends have get togethers, camping,even nights out at the club..and I never can go. My partner stays home with me and misses out to. in fact my partner has to take care of me day in and day out because I am so sick and fatigued, and run me to every dr apt.grocery shopping, errands...etc Not only that she has to put in extra hours  at work when possible because I cannot work..just to make ends meet. I appreciate these things and am thankful. What if I was alone with my suffering? What if no one cared? Its the little things in life that make a big deal:)
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484098_tn?1259531132
There's also a food allergy called Celiac's disease.  You may need to get a gastro doc to do a bowel biopsy to check for that.  That will also cause most of the problems you have.  Good luck!
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Avatar_f_tn
You all have great advice about eating the raw food.Personal I just can't get into eating fruit its the texture I think maybe also because I grew up with 6 brothers so we were meat and potato family.

But I had blood test done the first of October and they were 4 times the normal were as in Aril my AST  24 now 226 and ALT 46 now 236.I just had more blood drawn today and the results should be back Tuesday I'm hoping.Can you tell me if if your Enzymes were high and what were they?About once a week I DID have a few beers and cigarettes together.

I am on Methotrexate and Prednisone for 6 years now.I'm Dx's with MCTD,SLE,Raynaud's,Inflammatory Arthritis and Sjorgren's.I'm thinking if I have Hepatitis it has to be AIH or Toxic Hepatitis.I'm really nervous about the out come of my test.So I'm hoping to get some imformation from any of you about your results of your test and how long have they been elevated.Along with the Methotrexate and Prednisone I take Darocet,Folic Acid,Lyrica,Prevacid,Amldipine,Nortriptylin,Baclofen and Pilocarpine,eye drops for Sjorgren's.
I hope everyone is doing ok Take Care.

Please any advice I would love,
Mary
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484098_tn?1259531132
When my enzymes tests show high numbers (not very high), I can take milk thistle and L-carnitine and it hleps quite a bit.  Cutting the fats out helps a bunch.  But, the Gastro put me on Lopid, I think, which took a large amount of fats from my liver and that helped a lot!  Brought my enzymes down to normal.  

If your enzymes are super high, it could be gallstones!  
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Avatar_f_tn
Thanks for responding so quick.I had my gallbladder removed in June 2008.When you have AIH did your skin turn yellow also?Also did you have any symptoms before your Dx's?Because I'm having symptoms like when I had my gallbladder attack.

I just can't wait until next week for the results because its driving me nuts I'm sure you remember when this was going on with you.You try to foget about it but really its 24/7 the not knowing that could give you an ulcer alone.

Thank You,
Mary
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484098_tn?1259531132
My skin didn't turn yellow, but AIH will cause that when your liver is not in the best shape.  The only symptoms I had before the AIH Dx was the pain in the upper right quadrant, and I noticed big bloppy hunks of white mucus looking stuff in my feces.  that was the excess fats coming from my liver.  

I had my gallbladder out in 1990, and went many, many years totally incapable of eating fatty foods without having diarhea (diarrhea) and the pain in the liver and middle back.  Those were the same as when I was full of stones.  I have found out that everyone's symptoms are a bit different. My symptoms didn't go away until after the doc put me on Lopid and I added many, many more fiber foods to my diet (peas have a ton of fiber!!!).  Then it helped a lot.  I went a couple years with no problems, no matter what I ate, but now my liver is hurting again, and I get sick with fatty foods.  I can eat stuff that has olive oil in it, but other fats just kill me.  Just tell yourself that this is your life, you have no choice but to accept it, and eat very well.  A super wonderful diet will not make it go away, but it can hold off the damage a little longer, and help make you feel better.  I keep eating these Wisconsin Cheese Curds and they cause me soooo much pain, but they are so wonderful, I can't stop eating them.  I think I'll ask the doc for more Lopid to take care of the damage caused by this bad addiction!  LOL!  Sounds like an alcoholic or doper that needs a med to stop his addiction!  I think I am addicted to food.  I hear exercise is addicting, but I will never find out if that's true!  LOL!  

Get some Milk Thistle and L-Carnitine (L-Carnitine will help remove fats from your liver; the fats build up in there and cause your enzyme levels to go up, and will cause the pain), take them and wait for the doc to give you Rx meds.  You don't have long to wait.  If you can eat just fruits and vegies, it would make a difference.  Some cannot eat fruits, but try to eat what your body and tongue will accept, in the non-fatty foods categories. And NO ALCOHOL!!   good luck, and keep me informed of what the doc says.  
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