Re: , not ! :)

[Guest guest]

,

Sorry about the name, I just assumed you were since you didn't include your name on your first post!

When were diagnosed with AIH? Are you on medication? As I said in my previous post, I was just diagnosed in January after having a liver biopsy done on Dec 27th. I was on 20 mg of prednisone daily but we began tapering the dose down around the end of February. I'm on 10 mg of prednisone a day now. The plan was to have me on 10 mg for a while and then taper it down or go off of it completely. However, my liver enzymes were elevated when I had lab work done last Friday. I don't know if my doctors will increase the prednisone again or just keep me on 10 mg and see what happens.

I am currently under the care of a rheumatologist and a gastroenterologist (GI), along with my pcp and other doctors. My rheumy and GI are 100 miles away. Currently, my GI is having my rheumy make the decisions on my medication because I have other autoimmune diseases. I was diagnosed with lupus in 1996, but it seemed to be under control with just taking plaquenil. I changed to my new rheumy in July. At that time I was feeling healthier than I had felt in years. The new rheumy decided to do a blood test to see if I have a clotting disorder that about 50% of people with lupus have. Despite the fact that I was under the care of my previous rheumy for almost 6 years, he had never done the blood test for the clotting disorder. It ended up that I do have the clotting disorder, so I'm on coumadin in hopes of preventing the blood clots, strokes, and/or heart disease that are often causing by the clotting disorder. On Jul 18, 02, I ended up in the hospital with acute pancreatitis while about 600 miles from home on a business trip. I'd had pancreatitis in 2000, but hadn't had any major problems with it for about 18 months prior to the attack in July. The attack was not quite two weeks after my first appt with the new rheumy. It was also only 3 months after I had an MRCP (MRI that looks at the pancreas and bile ducts) because I had been having short episodes of pain in the same area (under the right rib) as when I had pancreatitis. The MRCP didn't show anything and my GI doc told me that my pancreas was perfectly healthy and that I'd most likely never have another attack of pancreatitis again. He didn't have any answers as to what was causing the pain, though. From about Oct 01 to Apr 02, I had several incidents of the pain but they never lasted longer than a few minutes. Around the end of Apr 02, a couple of weeks after having the MRCP I quit having the episodes of pain, so I figured my GI must have been right. My pancreas was healthy and I'd probably never have another attack of pancreatitis. I had no pain from the end of April until Jul 18, 02 when I ended up in the hospital with acute pancreatitis. So much for never having another bout of pancreatitis! I went from feeling healthier than I had in years the beginning of Jul 02 to being sicker than I have ever been in my life the middle of Jul 02. I ended in the hospital about 15 times from Jul to Dec 02. Additionally, I had numerous ER visits for episodes of horrendous pain, nausea, and vomiting. During this time my liver enzymes were basically 'all over the place' as my rheumy put it. They ranged from normal a time or two to almost 800. The first that I knew of my liver enzymes being elevated was in Mar 02, when I was feeling very healthy. My GI and pcp said the elevated liver enzymes were nothing to worry about, so I didn't worry. My doctors started talking about doing a liver biopsy in August, but my GI kept insisting my liver was fine. He was sure that the problem was adhesions blocking the bile duct and that was the cause of both the repeated acute pancreatitis attacks and the elevated liver enzymes. I had surgery on Dec 9th to repair a hernia (which actually ended up being two hernias). The surgeon looked for adhesions around the pancreas/bile duct and there was not a one to be found. It was after the surgery that the GI decided to do a liver biopsy and the rest is history!

Ironically, on the day my GI told me the results of the liver biopsy I had an appt with my rheumy that morning. I wasn't even supposed to see my GI that day, but they worked me in since I was in Birmingham - the city my GI and rheumy are both in - 100 miles from home. Anyway, the rheumy told me that she was so glad that we had been able to keep me off of prednisone and control my lupus with only plaquenil. When I had the appt later that day with my GI I had no idea I'd get the results of the liver biopsy. I had talked to his nurse earlier and she said they had not gotten the results. I was seeing the GI because the surgeon that did the hernia surgery wanted me to see the GI because I was still having burning pain in the area where the hernias were. It ended up that the liver biopsy report was faxed to my GI only a few minutes before he saw me. He told me that I have an autoimmune liver disease that is consistent with the type liver disease caused by lupus. He said that the good news was that the liver disease I have (he never used the word hepatitis) typically responds well with treatment, which is normally prednisone and Imuran. I just started laughing and told him that my rheumy must have jinxed me by telling me how glad she was that we'd been able to avoid prednisone in treating my lupus. It was not until I read the biopsy report that I found out that the autoimmune liver disease I have is AIH. I had never heard of AIH prior to my diagnosis. In gathering info on AIH, I found that AIH is not caused by lupus, although doctors originally thought it was and at one time AIH was called lupoid hepatitis. I never have questioned my GI as to why he said the liver disease is caused by lupus. I guess on the one hand that since any time you have one autoimmune disease, you are more likely to have others - so in that sense I guess you could maybe say lupus caused AIH in my case. Simply having lupus does make one more susceptible to any number of health issues.

My GI doc has been my doctor since 2000 when I was having problems with pancreatitis. He is supposed to be one of the best GIs in the state when it comes to pancreas problems. However, I recently decided I want to see a doctor with more experience in dealing with liver disease. My pcp referred me to Dr. Raiford at Vanderbilt in Nashville, TN. They called today and told me I have an appt with Dr. Raiford on May 6th. Nashville is also 100 miles from my home. It's north and Birmingham is south.

Well, I didn't really intend to write a book, I'm sure I've bored everyone to tears! I look forward to reading your story if you care to share it.

Take care,

W