Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Welcome to the group. First of all, you mention sleep issues. Prednisone often causes wakefulness and " excessive energy " , for lack of a better term. Be sure to take the Prednisone early in the morning; do this both to minimize wakefulness and to keep your adrenal system functioning properly. Many of us found that short naps, morning and afternoon, helped a great deal. Yes, Prednisone often has side effects. However, using Prednisone while our livers heal keeps us alive, so it's a pretty good trade-off! Some people have extreme reactions to Prednisone; a lucky few notice very little. Do you work? Do you have family support for your situation? Do they understand the stresses that AIH and Prednisone can cause? You may not be, probably won't be, your usual self due to the effects of liver damage, and Prednisone is likely to make you feel worse before you feel better. Is AIH causing other symptoms, such as itching? The amount of Prednisone you're taking probably will be reduced very soon. 40 mg doesn't sound like a particularly high dose to start with; I took 80 at first. Most likely, the amount will be sharply reduced and then tapered very, very, very slowly over the months or years to come. The reduction will be geared to results of blood tests, which I assume you're gettiing frequently. Above all, don't make changes or stop on your own. You should have access to the results of the blood tests. I suggest that you keep a file, perhaps a punched notebook, of all the results. When you visit your doctor, you may find it useful to take a family member along. You probably aren't tracking as well as you usually do, and all this is confusing. I took my husband along, just once, and I learned afterward that I'd missed a lot of what the doctor had said. Usually, we don't know exactly what triggers autoimmune hepatitis in a specific person. Some antibiotics are suspected -- I took a very common one shortly before diagnosis, and doctors say that could have been the trigger. Any of several other things could have been, just as well. Even prolonged stress can be the trigger. Many people with AIH, perhaps most, take an immuno-suppressant along with the Prednisone. Taking such a drug allows one to use less Prednisone. If you're not using an immuno-suppressant, you might want to discuss the possibility with your doctor. The most common one is azathioprine, or Immuran. You should be taking calcium with Vitamin D to off-set the calcium loss that Prednisone causes. You may want to take a drug to help bone density, as well. Fosamax is the best known of these drugs, but several others are available. Many of us get a bone density scan when we begin taking Prednisone, to serve as a benchmark for later comparison. You should ask your doctor about this. My doctor advised hepatitis A and B vaccination; this was done after my Prednisone dose was substantially decreased. I can't remember the details about timing Prednisone and the vaccinations properly. If you're typical, your situation will improve soon. In the meantime, pamper yourself as much as possible. My doctor said, " Listen to your body. Be kind to yourself. " Accept every bit of help you can get. I definitely feel that having been in a situation where I could reduce stress and sleep when I needed to helped me recover from severe AIH. You were fortunate to have been diagnosed promptly; many people aren't. Yes, the treatment is crappy, but it definitely beats the alternative. (Side note: My HMO always sent out paper records the day after each test, and I could find my records on-line, too. Therefore, I didn't bother keeping records very carefully, knowing I could always ppick up what I needed on-line. Now, I must leave my HMO and find another doctor. The HMO will send records to my new doctor, but getting copies for myself would be neither cheap nor easy. I don't really need to have the records in my own hands, but I wish I'd been more careful about keeping every piece of paper I received.) We aren't doctors; none of us has medical training, as far as I know. However, we can tell you what we've experienced, what's helped us, and we can steer you to sources of information. As time goes on, you'll have more questions. Ask away. Yes, it's scarey and miserable, but this is a treatable disease -- so many diseases aren't. We're lucky, really. Best wishes. Harper In a message dated 1/2/07 7:50:17 AM, chrisnc06@... writes: > I was diagnosed 3 weeks ago with autoimmune hepatitis. they believe it > was drug induced by taking the antibiotic augmentin for sinusitis. > I also have hypothyroidism and was told augmentin is contraindicated > in people with thyroid problems. My liver was having acute symptoms > and a biopsy confirmed the diagnosis. I am on prednisone 40 mg daily > and having lots of sleeping issues. > Has anyone else gotten hepatitis this way? I am scared of the side > effects of the prednisone - any advice on treatment? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 I wrote you a minute ago; here's an addendum. You might want to get this book to help you learn more about your situation: Dr. Palmer's Guide to Hepatitis and Liver Diseases. Bear in mind that the most recent edition is 2004, so some information may have changed. It costs less than $20. If you don't find it locally, you can get it from Amazon or from her website, liverdisease.com. Best wishes. Harper In a message dated 1/2/07 7:50:17 AM, chrisnc06@... writes: > > I was diagnosed 3 weeks ago with autoimmune hepatitis. they believe it > was drug induced by taking the antibiotic augmentin for sinusitis. > I also have hypothyroidism and was told augmentin is contraindicated > in people with thyroid problems. My liver was having acute symptoms > and a biopsy confirmed the diagnosis. I am on prednisone 40 mg daily > and having lots of sleeping issues. > Has anyone else gotten hepatitis this way? I am scared of the side > effects of the prednisone - any advice on treatment? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 I keep writing bits and pieces to you. Here's one more. You AND your family need to know that Prednisone and AIH may -- just may -- cause temporary changes in your mood and personality and abilities. The changes, if any, may be even fairly extreme. Don't panic. These are almost entirely short-term effects. Ride the waves; it will get better very soon. Your doctor may need to explain this to your family, if you can't do it properly. My husband was very supportive, and he insists that I was always my usual sweet self through the early days of high Prednisone dosage. He's forgotten or overlooked the Prednisone days when I was extremely short-tempered and very, very forgetful. Harper In a message dated 1/2/07 7:50:17 AM, chrisnc06@... writes: > > > I was diagnosed 3 weeks ago with autoimmune hepatitis. they believe it > was drug induced by taking the antibiotic augmentin for sinusitis. > I also have hypothyroidism and was told augmentin is contraindicated > in people with thyroid problems. My liver was having acute symptoms > and a biopsy confirmed the diagnosis. I am on prednisone 40 mg daily > and having lots of sleeping issues. > Has anyone else gotten hepatitis this way? I am scared of the side > effects of the prednisone - any advice on treatment? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 you ask if I have AIH. Yes, I was diagnosed in May 2000. I, too, have had other serious illnesses. Why us? On the other hand, why us to be so very, very fortunate as to live in a time and place where AIH can be treated, and to have the mental and financial resources to obtain treatment. I think that until about 50 years ago, AIH wasn't clearly defined. Until Prednisone was discovered, there was nothing to be done for it, anyway. Once, those of us with AIH, even if we were wealthy and had a caring family, we would have simply wasted away, untreated, undiagnosed. Many people still do. I'm so sorry about the insurance snarls. That sort of thing happened to me once; I was covered only by my husband's insurance; I was living with him in Rome, where he was working; his company switched carriers and left a time gap; my husband was on deadline. I became extremely, seriously ill, and we had almost no money, no insurance, and not nearly enough Italian to handle the situation. It was bad. Six years ago, it seemed likely I would die very soon. My GP told me later than she'd thought I was done for. Now, I'm pretty well, although my energy seems limited and I feel that my accessible vocabulary is smaller. And, I don't look the same. However, I enjoy life very much. My liver panels, done each month, have been stable for the last four months. No, AIH can't be cured, but it's not a " life sentence " . We have life. Watch out for other autoimmune diseases. You and your doctor need to be aware that people with one autoimmune diseases are at greater risk for developing others. If you get a batch of unexplained symptoms, check out the possibility of autoimmune problems. Celiac disease is the most common autoimmune disorder, affecting one out of every 133 people in the U.S. Also, immunosuppressants leave you susceptible to other problems. Be careful to wash your hands often and to avoid people with colds, etc. Thrush and shingles are two things I've run into; I find they're fairly common in our group, and they need to be treated promptly. One more thing -- I find it works best to say I have an autoimmune disorder that affects the liver, rather than use the term hepatitis at first. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Harper, as always, you have such awesome advice! debby Re: [ ] autoimmune diagnosis I keep writing bits and pieces to you. Here's one more. You AND your family need to know that Prednisone and AIH may -- just may -- cause temporary changes in your mood and personality and abilities. The changes, if any, may be even fairly extreme. Don't panic. These are almost entirely short-term effects. Ride the waves; it will get better very soon. Your doctor may need to explain this to your family, if you can't do it properly. My husband was very supportive, and he insists that I was always my usual sweet self through the early days of high Prednisone dosage. He's forgotten or overlooked the Prednisone days when I was extremely short-tempered and very, very forgetful. Harper In a message dated 1/2/07 7:50:17 AM, chrisnc06@... writes: > > > I was diagnosed 3 weeks ago with autoimmune hepatitis. they believe it > was drug induced by taking the antibiotic augmentin for sinusitis. > I also have hypothyroidism and was told augmentin is contraindicated > in people with thyroid problems. My liver was having acute symptoms > and a biopsy confirmed the diagnosis. I am on prednisone 40 mg daily > and having lots of sleeping issues. > Has anyone else gotten hepatitis this way? I am scared of the side > effects of the prednisone - any advice on treatment? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Harper, thanks so much for your advice. I already got the book. My experience has been traumatic to say the least. In Oct. we celebrated our 30th anniversary at a resort and I got baWwd food poisoning. Then two weeks later was at dr. for sinusitis and prescribed augmentin. then two weeks later an entire body rash appeared and continues to this day. The itching was unbearable and they would not put me on the drug discussed in the book to help only an antihistamine which didn't help. To boot we were in the process of moving to NC from PA and my insurance was not set up immediately to be on my husbands policy!!!!! My treatment was delayed as I had to get set up with new dr's here so I should have been diagnosed sooner. But I am glad I have the dr I do and all my levels which were over 2000 are improving dramatically each week. I have only been on prednisone since 12/15 the day after my liver biopsy. we kept thinking hepatitis A but not that easy! this seems like a lifelong sentence at this point in time. I kept asking why me as I suffered another lifethreatening situation 4 years ago. trying to get past the asking and DEAL with what I need to. thanks for the advice I hope your situation is good? do you have autoimmune also??? thanksChris flatcat9@... wrote: Welcome to the group. First of all, you mention sleep issues. Prednisone often causes wakefulness and " excessive energy " , for lack of a better term. Be sure to take the Prednisone early in the morning; do this both to minimize wakefulness and to keep your adrenal system functioning properly. Many of us found that short naps, morning and afternoon, helped a great deal. Yes, Prednisone often has side effects. However, using Prednisone while our livers heal keeps us alive, so it's a pretty good trade-off! Some people have extreme reactions to Prednisone; a lucky few notice very little. Do you work? Do you have family support for your situation? Do they understand the stresses that AIH and Prednisone can cause? You may not be, probably won't be, your usual self due to the effects of liver damage, and Prednisone is likely to make you feel worse before you feel better. Is AIH causing other symptoms, such as itching? The amount of Prednisone you're taking probably will be reduced very soon. 40 mg doesn't sound like a particularly high dose to start with; I took 80 at first. Most likely, the amount will be sharply reduced and then tapered very, very, very slowly over the months or years to come. The reduction will be geared to results of blood tests, which I assume you're gettiing frequently. Above all, don't make changes or stop on your own. You should have access to the results of the blood tests. I suggest that you keep a file, perhaps a punched notebook, of all the results. When you visit your doctor, you may find it useful to take a family member along. You probably aren't tracking as well as you usually do, and all this is confusing. I took my husband along, just once, and I learned afterward that I'd missed a lot of what the doctor had said. Usually, we don't know exactly what triggers autoimmune hepatitis in a specific person. Some antibiotics are suspected -- I took a very common one shortly before diagnosis, and doctors say that could have been the trigger. Any of several other things could have been, just as well. Even prolonged stress can be the trigger. Many people with AIH, perhaps most, take an immuno-suppressant along with the Prednisone. Taking such a drug allows one to use less Prednisone. If you're not using an immuno-suppressant, you might want to discuss the possibility with your doctor. The most common one is azathioprine, or Immuran. You should be taking calcium with Vitamin D to off-set the calcium loss that Prednisone causes. You may want to take a drug to help bone density, as well. Fosamax is the best known of these drugs, but several others are available. Many of us get a bone density scan when we begin taking Prednisone, to serve as a benchmark for later comparison. You should ask your doctor about this. My doctor advised hepatitis A and B vaccination; this was done after my Prednisone dose was substantially decreased. I can't remember the details about timing Prednisone and the vaccinations properly. If you're typical, your situation will improve soon. In the meantime, pamper yourself as much as possible. My doctor said, " Listen to your body. Be kind to yourself. " Accept every bit of help you can get. I definitely feel that having been in a situation where I could reduce stress and sleep when I needed to helped me recover from severe AIH. You were fortunate to have been diagnosed promptly; many people aren't. Yes, the treatment is crappy, but it definitely beats the alternative. (Side note: My HMO always sent out paper records the day after each test, and I could find my records on-line, too. Therefore, I didn't bother keeping records very carefully, knowing I could always ppick up what I needed on-line. Now, I must leave my HMO and find another doctor. The HMO will send records to my new doctor, but getting copies for myself would be neither cheap nor easy. I don't really need to have the records in my own hands, but I wish I'd been more careful about keeping every piece of paper I received.) We aren't doctors; none of us has medical training, as far as I know. However, we can tell you what we've experienced, what's helped us, and we can steer you to sources of information. As time goes on, you'll have more questions. Ask away. Yes, it's scarey and miserable, but this is a treatable disease -- so many diseases aren't. We're lucky, really. Best wishes. Harper In a message dated 1/2/07 7:50:17 AM, chrisnc06@... writes: > I was diagnosed 3 weeks ago with autoimmune hepatitis. they believe it > was drug induced by taking the antibiotic augmentin for sinusitis. > I also have hypothyroidism and was told augmentin is contraindicated > in people with thyroid problems. My liver was having acute symptoms > and a biopsy confirmed the diagnosis. I am on prednisone 40 mg daily > and having lots of sleeping issues. > Has anyone else gotten hepatitis this way? I am scared of the side > effects of the prednisone - any advice on treatment? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 You are a real survivor and I intend on being in that group also! thanks for all the advice. I have hypothyroidism which is why they thought I was susceptible to the hepatitis in the first place. Are you still on treatment? I am hoping to get started on Imuran soon so we can lessen the prednisone. done a lot of reading on the internet and this treatment regimen has been tried and true for years so I feel somewhat safe. I am starting with a new internist here and will have him help with monitoring all that needs to be watched. Did you find any problems with your cholesterol levels? take care, Chris flatcat9@... wrote: you ask if I have AIH. Yes, I was diagnosed in May 2000. I, too, have had other serious illnesses. Why us? On the other hand, why us to be so very, very fortunate as to live in a time and place where AIH can be treated, and to have the mental and financial resources to obtain treatment. I think that until about 50 years ago, AIH wasn't clearly defined. Until Prednisone was discovered, there was nothing to be done for it, anyway. Once, those of us with AIH, even if we were wealthy and had a caring family, we would have simply wasted away, untreated, undiagnosed. Many people still do. I'm so sorry about the insurance snarls. That sort of thing happened to me once; I was covered only by my husband's insurance; I was living with him in Rome, where he was working; his company switched carriers and left a time gap; my husband was on deadline. I became extremely, seriously ill, and we had almost no money, no insurance, and not nearly enough Italian to handle the situation. It was bad. Six years ago, it seemed likely I would die very soon. My GP told me later than she'd thought I was done for. Now, I'm pretty well, although my energy seems limited and I feel that my accessible vocabulary is smaller. And, I don't look the same. However, I enjoy life very much. My liver panels, done each month, have been stable for the last four months. No, AIH can't be cured, but it's not a " life sentence " . We have life. Watch out for other autoimmune diseases. You and your doctor need to be aware that people with one autoimmune diseases are at greater risk for developing others. If you get a batch of unexplained symptoms, check out the possibility of autoimmune problems. Celiac disease is the most common autoimmune disorder, affecting one out of every 133 people in the U.S. Also, immunosuppressants leave you susceptible to other problems. Be careful to wash your hands often and to avoid people with colds, etc. Thrush and shingles are two things I've run into; I find they're fairly common in our group, and they need to be treated promptly. One more thing -- I find it works best to say I have an autoimmune disorder that affects the liver, rather than use the term hepatitis at first. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Yes, I'm still taking a maintenance level of Prednisone (5 mg) and 100 mg of azathioprine. I also take a small amount of thyroid medication. My cholesterol is fine. Only this basic treatment for AIH exists -- Prednisone and some kind of immunosuppressant. Safe? I don't know. However, not taking the standard treatment is downright suicidal, so it's a moot point. Harper In a message dated 1/3/07 5:16:12 AM, chrisnc06@... writes: > You are a real survivor and I intend on being in that group also! > thanks for all the advice. I have hypothyroidism which is why they thought I > was susceptible > to the hepatitis in the first place. Are you still on treatment? I am hoping > to get started on > Imuran soon so we can lessen the prednisone. done a lot of reading on the > internet and this > treatment regimen has been tried and true for years so I feel somewhat safe. > I am starting with a new internist here and will have him help with > monitoring all that needs > to be watched. Did you find any problems with your cholesterol levels? > take care, Chris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 > > I was diagnosed 3 weeks ago with autoimmune hepatitis. they believe it > was drug induced by taking the antibiotic augmentin for sinusitis. > I also have hypothyroidism and was told augmentin is contraindicated > in people with thyroid problems. My liver was having acute symptoms > and a biopsy confirmed the diagnosis. I am on prednisone 40 mg daily > and having lots of sleeping issues. > Has anyone else gotten hepatitis this way? I am scared of the side > effects of the prednisone - any advice on treatment? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 > I don't know if you were the one who asked me about Immuran making you dizzy? I am a " dizzy " blond anyway. All joking aside I am on so many meds until I do get dizzy, but who in the hey knows what meds are causing this. I had a liver biopsy which confirmed I have PBC/AIH (OVERLAP) ugh! The fatigue is unbearable. I currently am on 1,500MG.Urso Forte, 1 1/2mg.prednisone (I was on a much higher dose, & my little body couldn't handle it so Dr.slowly weaned me down.I take 100 mg. Immuran daily, atarax for itching (doesn't help.) I was just diagnosed with this liver disease in October 2006. Sincerely, > I was diagnosed 3 weeks ago with autoimmune hepatitis. they believe it > was drug induced by taking the antibiotic augmentin for sinusitis. > I also have hypothyroidism and was told augmentin is contraindicated > in people with thyroid problems. My liver was having acute symptoms > and a biopsy confirmed the diagnosis. I am on prednisone 40 mg daily > and having lots of sleeping issues. > Has anyone else gotten hepatitis this way? I am scared of the side > effects of the prednisone - any advice on treatment? > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.