COLLEEN'S AUTOIMMUNE HEPATITIS
(Or The Search For A Doctor Who Knew His Stuff!)
by Colleen Terry
was first diagnosed with Hepatitis Type-A in January 1976, while
living in Houston, Texas. I spent ten days in isolation in the hospital and then spent two
weeks at home and returned to work just as if nothing had happened.
In January 1977 I was diagnosed with Hepatitis Type-A again. The doctors said that was impossible. I was just told to stay home for six to eight weeks. Since I had just started a new job and had a 4-year-old to support, I gave up my job and moved back to Dallas and in with my parents. This meant changing doctors, not that the ones in Houston were that much help!
My doctor in Dallas, a family practitioner, referred me to a hematologist who then consulted with a gastroenterologist, and they agreed that a biopsy was called for. This gastroenterologist was not very skilled in doing a liver biopsy, so he tried to learn on me. After two tries, I told him to find someone who knew how to do a liver biopsy. Eventually, another gastroenterologist successfully did the liver biopsy.
I was then diagnosed with Chronic Active Hepatitis. At this time a regimen of massive Prednisone was prescribed. After months of gradual reduction of the Prednisone, I was taken off Prednisone completely and told that I could again resume normal activities.
In June 1978 I had another episode. Again, I received massive doses of Prednisone and stayed home for six weeks. I returned to work and gradually tapered off the Prednisone again.
During this time I heard about an experiment at The Wadley Blood Center in Dallas, where another person's white blood cells are extracted and made into a serum that is then injected into the patient. It was called "Transfer Factor". After a couple of the injections, I was doing so poorly that the doctor wanted to admit me "for observation!" "NO WAY" was my response! I went back to my regular doctor, a family practitioner at an H.M.O., and he started the Prednisone routine again. I was off work again for six weeks and recovered as I had the past two times.
In March 1979 I remarried and in November 1979, we moved to The Colony, Texas, a suburb of Dallas.
In September 1979 it happened again. I started the Prednisone routine. I got to stay home this time for about seven weeks.
Since 1977 I have not been very comfortable with the information that I had received from many of my doctors. After going to the library frequently to read medical journals (no books on this subject were available), I called Poison Control to get a list of the side effects of Prednisone, and what I learned made me feel like I would surely die the next day! When I asked questions of my doctors, I frequently received "I'm not sure" for an answer. It was very frustrating! That is why I tried the "Transfer Factor." I was grabbing at any information or cure I could find. I found out about the American Liver Foundation, and although they had very little information on my specific condition they had more than anyone else.
In 1980 I changed to a family practitioner in The Colony. He referred me to a gastroenterologist in Plano. This doctor examined me every three months until I was totally off the Prednisone. Then I saw him every six months. In October 1982, this gastroenterologist decided that it was time for another liver biopsy. So I went into the hospital for a two-day stay. He did the liver biopsy perfectly this time. He confirmed that I had Chronic Active Non-A, Non-B Hepatitis. So the treatment stayed the same.
I started attending the The North Texas Chapter of the American Liver Foundation Support Group meetings occasionally. At one of these meetings, I heard of a research doctor at The University of Texas Southwestern Medical Center at Dallas (UTSW). I asked my regular gastroenterologist what he thought of this doctor and if he thought that maybe I should go to see him for a second opinion. He seemed angry with me for even suggesting this! Since I really liked him and had received more information and a more caring attitude from him, I just dismissed my suggestion. I continued hearing so many good reports about the UTSW doctor at the Support Group meetings that after about a year, I asked my regular gastroenterologist again about going to UTSW and this time he thought it would be a good idea.
In October 1990 I went to see the doctor at UTSW. My gastroenterologist had sent a copy of my blood tests, biopsy reports, and other notes ahead of time. This doctor reviewed my file and without an examination, asked me some "new" questions. When he discovered similar ailments in my mother and three sisters, he figured out that I likely had AUTOIMMUNE Chronic Active Hepatitis. Well, this was another new term for me. He explained it in layman's terms and I understood for the first time in thirteen years why this had happened. I was relived. His recommendation was to take a very low maintenance level of Prednisone so that the "flare ups" would not occur. He said that the fluctuations were causing additional damage to my liver.
My regular gastroenterologist agreed (imagine that!) So I started on a "maintenance" dose of .5 mg Prednisone per day. I continued to see my doctor for regular three month check ups, with great results. I have not had a "flare up" since.
I started attending the The North Texas Chapter of the American Liver Foundation Support Group meetings regularly. There I met a man from Australia who had the same disease. He told me about a new drug called Imuran. It has fewer side effects than Prednisone. When I asked my regular gastroenterologist, he became very indignant. After checking into the side effects myself, I changed my doctor of 15 years!
In October 1995 I made an appointment with Dr. Jeffery Crippin, a gastroenterologist at Baylor University Medical Center in Dallas. After he reviewed my records sent to him from my Plano doctor and had a Physician's Assistant examine me, he wanted to put me on a maintenance dose of Imuran. This was just what I wanted to hear! He said that it would take about six months to adjust to the Imuran and stop the Prednisone completely.
By January 1996 I was off the Prednisone! I feel great and NO MORE MOON FACE! (Compare this picture to the one at the top of this page.) Dr. Crippin explained everything and answered questions that I and my husband had without being condescending at all. I really like him. Because he is in such demand, he is very difficult to see, but he is well worth the wait.
(updated 2006)And now for the rest of the story, I have now been off of Prednosine for over 10 years and off Imuran for 7 years and all of my liver tests have come back NORMAL. I have had a biopsy that shows no scarring and no sign of the liver disease but a CT scan did show measurable scarring. I have been kicked off of Social Security disability and I am working full time. Dr. Crippin moved to St. Louis to be near family.
Of course, I was very disappointed with the overall knowledge of the medical doctors I have seen. My advice to anyone would be to seek all of the information you can find about your specific disease. The Internet is a super source. Armed with knowledge, you can take charge of your treatment. Ask questions and if you are not satisfied, find a new doctor. Remember that YOU are paying for his or her services. You deserve the BEST care and you deserve to feel comfortable that you are getting it! Also, find a support group or someone on the Internet to get thoughts and advice about your disease.
Now that you've read my story, I'd like to ask a favor. Please don't send me an e-mail asking for medical advise, or to tell you a list of my symptoms. I know that you are scared if you or a loved one has just been diagnosed with a liver disease. Just remain calm and follow the links (hint: click on an underlined word for more information) in the above story.My symptoms have varied over the years and have included pain in the lower right quadrant (over the liver), headaches, nausea, insomnia, memory loss (possibly from medication), vision problems, acne, bone & joint pain, mental confusion, bruising, and slow healing. My symptoms have not always been the same as some others that I've talked with. Yours will likely be different.
Your reaction to the medication will probably be different. At our liver support group meetings, we hear that people with the same disease and taking the same treatment often have completely opposite reactions and results.
Remember that just a few years ago, there was only Hepatitis Type-A, Hepatitis Type-B, and non-A, non-B Hepatitis. Knowledge and interest about liver diseases is growing daily. Keep looking.Also look at our Liver Disease Links. I hope these help.
Liver Disease Links
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© 1997, 1998, 1999, 2000, 2006 by Dave and Colleen Terry - all rights reserved.
Colleen's e-mail address is email@example.com
This page was last updated Thursday October 12, 2006