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    Includes Expert Content
    Auto-Immune Hepatitis
    avatar
    hunnebeee posted:
    Everyone always talks about Hepatitis C. I would like to discuss
    Auto-Immune Hepatitis. I was told my Auto-Immune Hepatitis was caused from over-the-counter medicines. OTC drugs with acetaminophen and other ingredients. I never was a pill popper; however, I use to take three tylenol, or other head-ache pills (not together, of course.) because two gave me no relief. I found out I was at stage three auto-immune hepatitis and then started taking steriods and immuran. Also, I gave my blood every week for over two and a half years and had biopsies.I would love to discuss with anyone else how this disease has affected their life and if they have been healed or are in remission.
     
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    lindakoy913 replied to mccindy's response:
    Thank you so much for your response, Cindy. It's good to be able to talk to someone who has been through this as I am feeling very isolated now. It is very difficult to talk to my doctor, and I need to ask the right questions to pull anything out of him. After reading up on this a bit more I'm very scared about what can happen if it does not go into remission and I'm inclined to take my chances with the osteoporosis. However, I'll bring up with my doctor taking some meds for the osteoporosis along with the Prednisone. I already take calcium w/ Vitamin D (but only 600 mg).

    One other thing I'm wondering about is the value of a liver biopsy. I asked the Doctor whether having information from a liver biopsy would change the course of treatment, and he didn't seem to think it would (I need to grill him more on this issue) and dropped it. If it will help with treatment options, or if there is a possibility of the liver problem being caused by something else, I'd get it done. But, I've heard that it is very painful, and I'm not sure it is worthwhile? My AST levels are only slightly elevated (about 5-10 points above the normal range) but I've read that this is not a good indicator of how damaged the liver is.
     
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    lindakoy913 replied to mccindy's response:
    Yes, my first thought when my doctor told me about the AIH was, geez, I hit the jackpot, because from all my reading beforehand I had thought that this type of complication was pretty rare for Sjogren's Syndrome.
     
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    tripacergran replied to lindakoy913's response:
    My Doctor was going to do an ultrasound but changed it to a liver biospy. The actual biospy was not painful at all. The nurse told me it would take less than 5 minutes and it took 2 1/2 minutes. The procedure was done under my right breast. The nurse also told me that there was a nerve at the site of the biospy that went to my right shoulder and that my right shoulder might hurt. She was right but it was not unbearable. She told me she would give me something for it but it really wasn't that bad. It was the feeling you get when you sleep on your arm wrong and get a cramp. You have your right arm behind your head because you have to lay on your right side. I also had to lay on a towel that was placed at the site of the biospy which acted as a compress. Having to lay in that position for about an hour was the worst part. I was so glad to be able to move when it was over. I'm not sure of the advantage except that they were able to tell the exact state of my liver. Also, I take 1200mg of calcium and 2000 I.U. of vitamin D per day. My vitamin D levels have always been low. My Doctor also recommended a fish oil tabet along with 800 I.U of Vitamin E each day. If my bones start to thin, I think I'm going the Reclast route instead of the pills.
     
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    mccindy replied to lindakoy913's response:
    Everything happened so fast for me that I didn't have time to worry about remission, a transplant or dieing.

    When I was diagnosed with AIH it was after having a CAT scan, MRI and finally the biopsy. It was uncommon to have AIH then. And my ALT and AST levels were very high.
    I didn't have any pain with the biopsy. To me it felt like I got sucker punched in my side. I actually said that to my doctor.

    I was sent to the University of Michigan after the diagnosis to make sure the Imuran and Prednisone was the right treatment for my AIH. I have never gone back to U of Mich. because they said my local GI doc was doing everything correct for me, and that I was responding good to treatment.

    Remission is where I am today and I will deal with whatever the future holds. Worrying about the future only adds stress to your mind, soul and body...and stress is not healthy.

    Keep a journal and ask questions over and over again if you have doubts. I have been trying to rack my brain for the name of the perscription I was on for the ostioperosis. It was not the monthly one that Sally Fields advertises for. When I was in the hospital I took it daily and had to sit up for a 1/2 hour afterwards. A month later I started on the once a week dose.

    I hope this helps more.
    Cindy
     
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    mccindy replied to tripacergran's response:
    Hi Ann,
    No I have never had those symptoms. I hope someone else can help with that question.
    Cindy
     
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    lindakoy913 replied to tripacergran's response:
    Thank you for your experiences with the liver biopsy. From what I've read/heard it seems like different people's experiences vary, with some having excruciating pain, others like you, not having much pain.

    I still need to get more information from my Rheumatalogist on what the benefits are to having the biopsy. If there is any damage, it is my understanding that nothing can be done anyway. And, I don't think the treatment would change based on the level of damage. I believe it they get the hepatitis under control (as determined by blood tests) they would confirm it by having a biopsy at that time.

    FYI, I've been taking Fish Oil (2400 mg) a day for the past couple of years, for my cholesterol levels based on my Primary Doctor's recommendation. However, just last night I was reading that fish oil supplements are subject to oxidation and that you should only use a type that requires refrigeration, otherwise the oxidized fish oil could actually trigger autoimmune flares. I'm not sure how correct this is as I've only seen it written in one book (A Body Out of Balance).
     
    avatar
    lindakoy913 replied to mccindy's response:
    Was the medication Fosamax or Actonel? My mother has been on both of them, but her condition is now so bad that she is on the strongest osteoporosis medication around (Forteo) that needs to be injected.

    I do believe that stress and negativity can definitely affect the progression of this disease, and I am trying to keep a positive attitude. It has been difficult though as this is so new was so unexpected, and I have never been the most positive person.

    All of this has been made even more difficult by the attitude of my Rheumatologist. One of the 1st remarks he made to me after telling me I had AIH (very-off handedly) was, "Well, now I have something to treat". I have a great primary care physician, and I think I am going to need to see him to discuss things, and to have him "translate" and see if I can get more information, if I can't get it from my Rheumatologist. I'm wondering if I should change Rheumatogists, but the pickings are slim here, and I know he is very well qualified (and was originally suggested by my PCP). I also know that it takes 4-6 months to get an appt with a Rheumatologist, so I'm stuck with this one for at least a while.

    I must tell you that your remission story is giving me hope. Thank you. Take care.
     
    avatar
    tripacergran replied to lindakoy913's response:
    Others may know more about Reclast than I do but I can tell you what I know. My Mother has osteoporosis and is somewhat bent over because of it. She also has a very sensitive stomach and could not take the pills. Her Doctor sent her to Duke University Hospital and the Doctor there recommended a Reclast treatment after her tests came back. He didn't even know she couldn't take the pills. It was administered via an IV and takes around 15 minutes. She had to stay another 15 minutes to make sure everything was OK and then we went home. She is supposed to repeat it yearly. She got along great. If anyone else has tried this or knows more about it, I would love to hear from them. Right now that's the route I am considering.
    Later, Ann
     
    avatar
    tripacergran replied to lindakoy913's response:
    I had not heard that about Fish Oil and my Doctor didn't say anything about the type to use. I'll try to research that but if you get any more info on it, please pass it along. My pills are in a capsule. I get them from Trader Joe's and the bottle says "Molecularly Distilled Salmon Oil". I take 2 a day.
    Thanks for the information, Ann
     
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    billm57 replied to tripacergran's response:
    always check expiration date - dont use outdated products - oils tend to oxidize and become rancid - you can refrigerate any type - the krill oil is advertized to be better than salmon oil - its more expensive i know
     
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    lindakoy913 replied to billm57's response:
    Did a little googling, and found this MD's blog regarding fish oil oxidation.
    http://www.proteinpower.com/drmike/uncategorized/oxidized-fish-oil/
    As billm57 mentioned, you need to worry about the fish oil getting rancid even if it is not past the expiration date. He recommends keeping it in the refrigerator in a glass bottle, and doing a weekly "taste" test.
     
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    mccindy replied to lindakoy913's response:
    It was Actonel and I was put on it the same time I was put on the Prednisone. Since I was only 49 at the time, it was perfect timing because of menopause.
    Instead of seeing a new rheumy doctor, I would ask your primary care doctor get you in with a Gastrointestinal, liver disease specialist. This is their medical field and I think would be better at treating AIH. This is who my primary care doctor called in when my AIH started. This doctor did my biopsy and I didn't think it was a big deal...but that could be because he does many of them. How many does a Rheumy doctor do a year? You want to be able to trust that your doctor is doing the best treatment out there for you. It will help to keep you in a positive way of thinking. And never give up on the thought of remission...it is your hope for the future.
    I'm here any time you need to talk.
    Cindy
     
    avatar
    mrita61 replied to mccindy's response:
    Hi Cindy,
    I have now been on Imuran for three weeks and last week they lowered my prednisone to 5mgs and two days later I woke up with terrible body aches and a throbbing headache. I called my Dr. at Uof M and she has upped my prednisone to 7 1/2 mgs. to see if the symptoms go away. She said that will give her an indication as to whether the weening me off the prednisone is causing these symtoms or if it is the Imuran.My labs last week were good and in the normal range.

    Did you have any of these symptoms from the lowering of the predisone or the Imuran?
     
    avatar
    crackrjak replied to mrita61's response:
    I can tell you from experience it's the imuran. That stuff put me in the Beaumont for 2 weeks needless to say that wasn't fun with a 105 temp to boot with it. I have been on Cellcept since that occasion and have not had it since. And yes my doctor out at U of M put me on it and it has been great.
     
    avatar
    mrita61 replied to crackrjak's response:
    I also had a fever,however not as high as yours. Mine was 100.9 last night, though I am feeling better today. Today is the second day on the 71/2 mg of prednisone.How long after being on the Imuran did you get your symptoms and how long were you not feeling well before ending up in the hospital? I was also having heart palpatations which seem to be better today. I am suppose to call my Dr tomorrow if I am not feeling better,though I feel much better today. I guess I will see how I feel tonight.


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