Trusting Doctors

May 20, 2003

Sharon,

I think one of the points you are missing is that often times we should not accept what our doctors tell us as the gospel. I'm not saying that we should go against what our doctors tell us to do, but I do think it is vital to get enough information to ask intelligent questions of your doctors. For me, after some of my other docs began saying I needed a liver biopsy in August (my GI was insisting there was nothing wrong with my liver, despite liver enzymes as high as 700+), the GI finally did a liver biopsy the end of December. On Jan 6, 03, I was told that there was just this little thing wrong with my liver - AIH, but not to worry because it typically responds well to treatment with prednisone or imuran. My biopsy revealed stage 3 fibrosis, so it seems the damage was moving right along in my liver that 'had nothing wrong with it'. The GI told me he didn't even want me to start treatment until I'd completely healed from hernia surgery I had in December. Thank goodness he consulted with my rheumy and she said I absolutely could not wait to begin treatment. I saw the GI for a repeat visit the end of January. I had been on 20 mg prednisone daily for 2 1/2 weeks. My liver enzymes were much improved. The GI told me that he didn't need to see me or my liver enzymes for 6 months. He said that he would taper my prednisone down to 10 mg daily over the next month. However, since I have multiple autoimmune diseases, he'd let the rheumy make the final decision on the dose of prednisone. Now, remember, he told me he didn't need to see me or my liver enzymes for six months, yet he was planning to cut my prednisone in half after only being on it for 2 1/2 weeks and having one set of improved labs. He wasn't even going to bother checking my liver enzymes again until about 5 months after cutting the dose of the prednisone in half. After talking with people in the group, that set up red flags for me. Luckily, my rheumy proceeded with more caution in lowering the dose. However, I have been down to 10 mg prednisone daily since Apr 5th and my liver enzymes have ranged from 3 to 10+ times normal since that time. When my liver enzymes were about 3-4 times normal on Apr 11th, I faxed the labs to my rheumy. She called and said she wanted them faxed to the GI. They were faxed to the GI and I never heard a word from him or from my rheumy. It was then that I decided I needed to see a different doctor and had my pcp refer me to a hepatologist at Vanderbilt in Nashville, TN.

My whole point to this is that if not for what I've learned from the group and the internet, I would have probably just ignored the increase in my liver enzymes as the prednisone was decreased. I mean, geez, my GI obviously is not concerned about it. He basically acts like AIH is really nothing to be concerned about - no big deal at all.

I read the following paragraph out of "The Liver Disorder Source Book" by Dr. J. Worman, M.D. today.

'Over the long term, most patients with autoimmune hepatitis will develop cirrhosis despite having a response to treatment. Nonetheless, treatment is essential as the progression of disease can be rapid and dramatic without it. Treatment will significantly slow the progression to cirrhosis. Even patients who already have cirrhosis at presentation should be treated because stopping the inflammation will halt ongoing liver damage and the rapid development of complications or liver failure. For patients with chronic autoimmune hepatitis who develop complications of cirrhosis or liver failure, liver transplantation is an effective procedure. The disease almost never recurs in the transplanted liver, possibly due in part to powerful drugs used to suppress the immune system to prevent transplant rejection.'

Too many times, patients sit back and put 100% trust in their doctors and that's not always a good thing. Doctors are human and they spend only a very minutes with you during a visit. They often overlook things and make mistakes. It is up to the patient to educate themselves enough to know whether they should trust the doctor completely or find a different doctor with more experience.

W

May 21, 2003

Dear W.,

I appreciate your response and remember that I was one of the

groups members who encouraged you to get a second opinion, but that

was because you were questioning your treatment under your first

doctor. I also was seen at first for 6 months by a gastro who didn't

do a biopsy or begin any treatment, after which I made a change in

physicians, got my biopsy, and began treatment for AIH in 1986.

The problem here is that these members are 100% satisfied with

their treatment, and proudly shared their improved LFTs and biopsies

with the group, along with their treatment regimens. That is where I

don't believe other members should challenge them. We are not M.D.s

or research scientists; we shouldn't have to provide tangible

scientific evidence for treatment that is approved and prescribed by

our physicians. Maybe some of their doctors are involved in research

or have discovered new treatments that later will benefit others of

you.

Sharon G.

May 21, 2003