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Infusion #61 turned out to be a little more eventful than normal.
I was switched from 400 mg, which I have been on since 2012, to 600 mg for my last 3 infusions. Now, for this infusion, my doctor raised my dosage to 800 mg and we're going to see how that goes to help my peri anal disease (fistulating). New research has shown doses of 1000 mg of Remicade has helped with fistulas so we're slowly raising my dose to get to that point. So what made this infusion different than all the others? Well, let's start with my arrival to the clinic. I pulled into the parking lot with 5 RCMP vehicles spread throughout. One at each entrance and 3 in front of my clinic lights flashing. Of course my first thought was, "ah crap, the clinic better not be closed". It was an interesting site. No one in the cars, but lights flashing and cars running. Luckily the clinic was open but no one knew what was going on. There's a bank in the complex, so maybe it was robbed...who knows. That was event number 1. Event number 2 was happy and sad at the same time. When I get to the clinic, I have my blood pressure and temp taken followed by checking my weight.
Blood pressure - good Temperature - good Weight - ummmmmm....... I think the scale's broken.
The read out said 83.9 kg (185 lbs, 13 stone) I first thought, that can't be right. The nurse said to try it again. Yep, same the second time. She asked why I thought it was wrong and I asked her to check my last infusion weight. She goes "Oh, what have you been eating?" I was 77.9 kg (171 lbs, 12 stone) just 6 weeks ago, but I haven't changed my diet...other than eating jujubes...since then. I know I didn't eat 14 lbs of jujubes!!
So... "happy" I'm gaining weight and "sad" I'm gaining weight.
During my infusion I thought over and over what I did different....nothing. So the only thing I can think is, the change in my dosage from 400 to 600 mg helped immensely in how my bowels are absorbing nutrients now. Now, I'm at 800 mg and if this keeps up, I'm going to have to go on a diet for the first time in my 51 years. (.... and give up jujubes)
Have you ever known what your Remicade "levels" were? Precisely they're called the
Infliximab trough concentration levels
Now, to be honest, I never knew what these were, only that I have heard my specialist talk about my Remicade levels and how they are fine. I get blood work every now and then to check them to make sure I even have some. But not until today, when I went to my semi yearly visit to my specialist did I understand what they were. She was telling me that she wanted to raise my dose to 800 up from 600 every six weeks to try and combat my lingering peri anal disease. She went on to tell me that my Remicade levels had dropped to 2 ug/mL (microgram/milliliter) from 3. Which basically is the lowest level the Remicade has reached before I get my next dose. Ideally the target level should be between 3 and 7 ug/mL, that's the target at least. What scared me a little was the fact that she wants my levels to reach 10. But if the highest range is 7...what the hell is 10?! She went on to tell me that new research has shown that peri anal disease does well with levels to 10 ug/mL. In my case, the Dr thinks my levels were maintaining above 3 because I was taking Imuran (azathioprine). But for the past few months, I've been weening off of it so, she is raising my dose of Remicade instead.
First dose at 800 is next week. Well... let's see what happens, shall we. Fingers crossed.