Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Dear Ellen, Many of us have experienced frustrations with doctors and have had to change doctors, but your situation, with the doctor being so defensive and blaming you, really is exasperating. I'm sorry you have to go through this. First of all, you might want to get ahold of a good reference book about liver diseases. Many of us have read Dr. Palmer's book, Guide to Hepatitis and Liver Disease (revised edition). You have every right to find the kind of doctor you described, " Having this disease is upsetting enough I really need a doctor who>will talk to me and explain things and not get defensive when I ask>him questions. " Where are you located?; perhaps there is someone else in this group that can recommend a hepatologist in the area if this new doctor also doesn't meet your criteria. As for the chat room, I don't know how it works. I'm sure someone else will answer that. If you have any specific questions, feel free to ask the group. Someone will have experienced a similar situation. I " m unclear from your e-mail whether your previous doctor completed your diagnostic workup. (You said it " resembled " AIH) Did you have a biopsy? Welcome to the group. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Ellen, my heart goes out to you. I was in your shoes just a few weeks ago with finding out that I had AIH. Your ex doctor sounds absolutely awful, I am sorry that you have had to go through that. I have made it through my first week of being prednisone, and I have felt better than I have felt in honestly 3 years. I wish there was a way that you could get treatment before 4-11, so that you could start feeling better. I don't know if everyone turns around that quickly on the prednisone, but I am amazed at how much better I feel. And I was mortified at the idea of having to take the prednisone. I also was completely terrified, thinking my life was ending, but now, thanks to the support and insight of the people on this wonderful support group, I am thinking that life is going on, I have way to many hopes and dreams to put them away on a shelf just yet, as I am sure that most other people feel the same way when it comes to plans for the future. And as far as my doctor goes, I think it's natural to ask questions, and also to not be at ease with a new doctor as this is all new to you. My docter came highly recommended by my brother-in- law, who happens to be my primary care internal medicine specialist, yet I am going for a second opinion to satisfy my own skepticism. Hang in there, things will look up. Gungho, Kelli > > Hi, > > I was recently diagnosed with what according to my ex- > doctor " resembles " AIH. He was awful. He wouldn't answer my > questions. Actually, whenever I asked a question, he acted as if I > was challenging him. He put me on Prograf and then when I called > his office on a Thursday to let them know about the side effects I > was experiencing and asked - should I be concerned, would they pass, > or would I have to get used to them, he didn't call back so when the > weekend came I called the doctor on call and he said to stop the > medication until I could talk to my doctor on Monday. I called first > thing Monday, they said start taking it again. I did. I called on > Wednesday with a question about the hemocult cards they had sent home > with me and they said stop taking the medication. When I went in to > see him today, he said that I was not cooperating with the > treatment. I was floored. I did exactly what he and his office told > me to do. It ended up with him saying that we didn't have a > therapeutic relationship. I have an appt to see a new hepatologist > on 4/11. > > Having this disease is upsetting enough I really need a doctor who > will talk to me and explain things and not get defensive when I ask > him questions. > > Anyway, I'm terrified - of the disease, of the treatment - of the > rest of my life. I'm desperately looking for people to talk to who > understanding and can share their experiences. > > I'm sorry to ramble on so long. > > Thanks, Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Ellen, Never be sorry for rambling, that's what we are here for. Dealing with AIH can seem scary, especially if your newly diagnosed. I felt like the only person in the world with this condition. Hopefully your new Dr. will be more knowledgable and over time, the both of you can work together to get your AIH under control. You have every right to ask questions, that's what your supposed to do. I had at least 10 questions every time I saw my doctor and I was seeing him once a month when I was first diagnosed. If you have questions continue to email the support group, more than likely we had/have the same question.. Live life to the fullest everyday. lynch_lln <lynch_lln@...> wrote: Hi,I was recently diagnosed with what according to my ex-doctor "resembles" AIH. He was awful. He wouldn't answer my questions. Actually, whenever I asked a question, he acted as if I was challenging him. He put me on Prograf and then when I called his office on a Thursday to let them know about the side effects I was experiencing and asked - should I be concerned, would they pass, or would I have to get used to them, he didn't call back so when the weekend came I called the doctor on call and he said to stop the medication until I could talk to my doctor on Monday. I called first thing Monday, they said start taking it again. I did. I called on Wednesday with a question about the hemocult cards they had sent home with me and they said stop taking the medication. When I went in to see him today, he said that I was not cooperating with the treatment. I was floored. I did exactly what he and his office told me to do. It ended up with him saying that we didn't have a therapeutic relationship. I have an appt to see a new hepatologist on 4/11. Having this disease is upsetting enough I really need a doctor who will talk to me and explain things and not get defensive when I ask him questions. Anyway, I'm terrified - of the disease, of the treatment - of the rest of my life. I'm desperately looking for people to talk to who understanding and can share their experiences.I'm sorry to ramble on so long.Thanks, Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Ellen I have taken Prograf did fine except I felt "surreal". My hep. Dr. put me on it but my rheumatologist took me off. If you have any specific questions feel free to ask. Thanks, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2005 Report Share Posted March 19, 2005 In a message dated 3/18/2005 6:41:04 PM Eastern Standard Time, lynch_lln@... writes: Does anyone take medication for depression? Hi Ellen I do I do!!!! I take 150 mg of zoloft and it helps a lot. My hepatologist said that sometimes it even gives patients a little extra energy. I know that disease causes or adds to depression, so what steps has anyone taken to help battle this along with or in place of medication and how do you hang on to your sense of personal empowerment? By researching, reading, asking questions and taking an active part in my health care decisions. I would love to go for counseling but I'm not physically up to it yet. How do you deal with the fear that comes along with disease and these horrific medications? I complain, rant, rave and whine a lot. I lean on my friends and family as hard as they will let me--Bless them all. Finally the CHAT ROOM, does anyone go there? I keep logging in but no luck. Would anyone like to set a time to meet in the chat room? I would love to and was thinking the same thing. With so many people, how do we do about picking a day and time? Any ideas? Regards Elaine Long Island, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 http://www.wjgnet.com/1007-9327/15/1035.asp Abstract Autoimmune hepatitis (AIH) is a necroinflammatory liver disease of unknown etiology that occurs in children and adults of all ages. Characteristics are its autoimmune features, hyperglobulinemia (IgG), and the presence of circulating autoantibodies, as well as a response to immunosuppressant drugs. Current treatment consists of prednisone and azathioprine and in most patients this disease has become very treatable. Over the past 2 years, a couple of new insights into the genetic aspects, clinical course and treatment of AIH have been reported, which will be the focus of this review. In particular, we concentrate on genome-wide microsatellite analysis, a novel mouse model of AIH, the evaluation of a large AIH cohort for overlap syndromes, suggested novel criteria for the diagnosis of AIH, and the latest studies on treatment of AIH with budenoside and mycophenolate mofetil. ____________________________________________________________ Digital Photography - Click Now. http://thirdpartyoffers.netzero.net/TGL2241/fc/BLSrjpYQ341AJ0CJdgrX5TfiNROlGLrmY\ lrptqTPWAedvbrLWC7rSql2XNe/ 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.