A Little Scare

I went to my AIH doctor while M was here and we spoke with him about my illness and my recent issues with being sick. It was nice having my wife along, so she could meet the doctor in whom I have so much built up trust and respect. For his part, he described in 5 minutes everything we've been doing about my AIH for the last 12 years and I think she got a lot of value out of that.

However, I wasn't able to get my blood work done prior to that visit. I got it done the following Friday (two days later) and then had to wait until yesterday to hear the results.

My ALT and AST, both prime liver-function indicators, were astronomically high. ALT has a typical range of 0-45 and AST is 0-40. My results were 182 and 145. I managed to get in contact with my doctor today and he is dumbfounded by these results. Especially since I have been doing so well for so long with my meds and my blood test results... I have occasionally come out high on one or both of my liver-function results, but just small blips (the occasion mid- to high-40s, even an occasional 50). These current numbers are similar to what I had when I was first diagnosed and started treatment (when I was first diagnosed, I was in the high 200s and low 300s, but they dropped quickly with treatment).

Complicating the issue is the fact I'm leaving for SJ on Saturday. We just don't have time to do much between now and then.

He provided three options:

1. Go on my steroids (prednisone) for three weeks until I return and can get another blood test done. This has a few disadvantages; I react well to prednisone, but higher doses can change my personality and has some other side effects. Usually I get happier with steroids, but sometimes I get meaner, morose, or lethargic. Also, if something else were to happen, the prednisone might mask the issue while I'm on it.

2. Up my Imuran take again. We have been slowly lowering my Imuran because it is hurting me to be on two powerful immune suppressants (Enbrel and Imuran) at the same time. However, Imuran takes a while to "kick in" so upping them won't see a change in the results for a few weeks most likely. Secondly, I'm flying shortly and going to a much colder and wetter climate, with viruses and flus to which I am not accustomed. Upping my Imuran means I am lowering my immune system at exactly the wrong time. I may get violently ill on my trip and be laid up far away from my doctors (while I'm sure M's mom can get me great care, they don't know my history like my current doctors do).

3. Do nothing different, continue to take Imuran and present levels, and repeat the blood tests as soon as I get back. Aggressively treat it then if my results come back still out of range while my doctor has complete access to me.

We discussed the options for a bit and then I decided on option 3. Liver disease is, thankfully, a slowly debilitating disease. My numbers are really not so bad as compared with people who are in end-stage liver disease (their ALT and AST numbers are in 1000s typically-- I'm far from that). It took around 5 months for my numbers to go from in-range to where they are now, so there is plenty of time to treat aggressively and get everything back on track. I am flying to SJ shortly. Not knowing how I'm going to react to upping my meds (or anything possibly more aggressive that we might come up with), would possibly cause me to have to miss my trip or be susceptible to everything I come in contact with along the way and while I'm there. Lastly, we are both incredulous that these results are not somehow a fluke. Yes, they might be high and we need to treat it, but going from high 30s/low 40s to 4 times that amount in a few months? Possible, but possibly influenced by other sources. Possibly one of the cold medications I was on trying to beat the cold I had helped lower my liver function. Maybe it is an adverse reaction to one of my other medications, a food, or something else external.

One of the great things about my doctor is that he shows me his concern and he is quick to act... when it is necessary. He doesn't panic over one bad test, even if it is very bad, as this one was. He wants to see trends and consistency before he does anything that is going to affect me unduly. Too often doctors react to one bad test and over medicate or over diagnose without taking the entire history into account-- and the patient winds up worse than before. My doctor knows my history and knows that this is very unusual for me. Better to see if my meds will calm this down and get it back under control and repeat the blood tests in a couple of weeks than to panic now and possibly do something even more destructive in trying to solve the current issue.

I am comfortable and confident in this decision. I'll start panicking in 3 weeks if/when my blood tests don't change or get worse, and will ask my doctor to be aggressive in getting things back under control. This way I can still go on my trip to SJ, I don't have to worry more than usual about the illness and muck that I will be exposed to at the airport and on the airplanes, and I don't have to remember any new treatments. We'll wait and see what happens, and then treat as required.