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Sjögren's Syndrome Message Board
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Old 10-17-2008, 04:00 PM   #1
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marys1358 HB User
AutoImmune Hepatitis

I just got my blood test back and my enzymes level is VERY high GOT/AST 226 LAST MONTH 28 AND GPT/ALT 236 LAST MONTH 46 what or how can it go up so fast in 1 month?I've been on the same meds. for 1 1/2years Methotrexate 8 pills aday,Hydroco/apap 5-500 1 aday and Prednisone 7 mgs.adaythese were the concerns for my Dr. and she has me off Methotrexate for 2 weeks then more blood test.
I'm wondering if this is a autoimmune disease for everything I have going on or toxic hepatitis?I was just Dx's with Sjorgren's a month ago but I know I've had it for at least 3 years just from the symptoms then finally had my dr run the test came back positive for SSA but negative SSB.I also have SLE,Raynauds amd Inflammatory Arthritis.

Would love any info.
Mary

 
Old 10-21-2008, 07:13 PM   #2
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Re: AutoImmune Hepatitis

Mary, sjogren's seems to be a disease with a mind of its own.....from all I have read it attacks people differently and individually.....also with my own experience I know I have had it for years but it was missed....

.I don't drink or smoke but have auto immune hepatitis and cirrhosis...I have complained for years of fatigue but got nothing.....today I was at a highly recommended breast oncologist that I was sent to by my gynecologist because both my immunologist and gyn felt two lumps in my left armpit under my breast, the mamo and ultra sound did not pick anything up, but you can see when you look at my upper chest a difference where there is something puffy there and she just blew me off.......she told me basically, no mri.....

she was not interested in my other illnesses even though I tried to tell her sjogren's does sometimes lead to lymphoma, she decided no mri was necessary.....she gave me the 6 minute exam with no further tests to get her bonus from the insurance company ...... I left her office and threw her card in the trash......I will get the mri because 2 doctors have felt the lumps and when I dry my hair every day, I see the difference between my breast.......

I have cirrhosis because my doctor of 10 years who I trusted never bothered with my liver enzymes that were high......I do know with sjogren's you need to eat healthy and try to exercise as with all auto immune disease.

Vitamins are most important....herbs too but be careful......try to be calm and relax... and if in pittsburgh, choose your doctors very carefully.
gcb in pgh

 
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Old 10-23-2008, 05:23 PM   #3
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Re: AutoImmune Hepatitis

gcb,

Thanks for the info. and sorry to hear everything you went through.I hope everything goes OK with you.Wouldn't you just like to put the Drs. in our shoes and see how they feel.It just isn't fair at all and the money they get.You know but I really like my Dr alot she is good listioner,ask how I'm feeling,LOOKS at my questoins etc....

Can I ask what your enzymes levels were.Do mine seem high to you?I have blood test again next Wednesday can't wait.Right now it feels like the same symptoms when I had my Gallbladder out and that ws only in June2008 and my stomach is So bloated can't stand it.

Thanks for the info.
Mary

 
Old 10-25-2008, 08:13 PM   #4
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Re: AutoImmune Hepatitis

I cannot remember what all my numbers were when they finally found the sjogren's. It was primary sjogren's. There is no cure, I have read all I can so the numbers never meant much to me. Maybe I was too ill to think about it.

I was really sick with my usual winter bronchitis but this year was different. As always my voice my gone but I could not get it back. I had a lung scan done and they found multiple nodules on both lungs but just sent me to a pulmonary doctor.....no help....went to 2 different doctors.....I was coughing and throwing up....sleeping about 16-20 hours a day....overwhelming fatigue.....since I had copd they just kept giving me advair(not good for sjogren's patients)....

I have an irregular heart beat that I take lopressor and had a heart scan also which only showed the lung problem.....no one could get my voice back or stop the cough...or help with the fatigue.....so back to my pc and he said he didn't know what he could do....I then just sat there and cried and said he had to help me..I needed to get back to work...he tried one more blood test....called me 3 days later and said I had sjogren's.....I didn't look like a patient with sjogren's which was why he didn't look for it, which is ridiculous...

So off to an immunologist who got all my past records and noticed my liver enzymes had been high for years so he sent me to a liver doctor....in the interim, he did his own blood work because he did not believe my pc's blood work and his confirmed definitely sjogren's and autoimmune hepatitis.....

the liver doctor didn't think I had a liver problem either but he did a liver biopsy, I was shocked when they came back and said I have cirrhosis......my biggest problem is ammonia and the toxins from my liver. My liver is now operating at 70% and will continue to decline but I hope they find a cure in the next few years.

I am on Xifaxan 800mg a day so I can function but the fatigue is bad as is my memory.....my ammonia levels are at 147 which are high.....I just found a much better liver doctor.....the problem with all the doctors is they are over worked, most must meet quotas and you need to have an experienced one.


I really liked my first immunologist, he found my liver problem but knew nothing really about sjogren's, he is just a general rheumatologist....so I have found a sjogren's specialist but I am not impressed.....there really is nothing it seems to help.... I was on Plaquenil for about 5 months and it made me worse.....I have found eating right makes you feel better than anything.....but finding good salad, vegetables and fruit it almost impossible.

I know you must see an good eye doctor too, another monthly visit..... My left eye does have some tear duct problems and I am on restasis, I would not worry about the numbers as much as I would focus on the things to do to feel better......I also know you must take care of the auto immune hepatitis, I wish my doctors would have paid attention to those numbers....good luck...
Gcb in pgh

 
Old 10-27-2008, 12:00 PM   #5
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Re: AutoImmune Hepatitis

Thanks Gcb.I'm sorry to hear about what you have gone through it just doesn't seem fair does it.I hope day it will be under control for you.
I haven't been Dx's with AIH yet they're still running test.But I have a correction to make it wasn't last month it was in Aprill since my last enzyme levels were taken.I'm not sure if that will make a diffference or not.I just can't wait until next week with the results.You know its the waiting that will do more harm it seems like.

Thanks again,
Mary

 
Old 11-07-2008, 01:51 PM   #6
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Re: AutoImmune Hepatitis

Just wanted to say thank you for responding but I got the 2 results back and it was the medication that elevated my enzymes.

So thank you all,
Mary

 
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