Rheumatology Appointment: 14-06-18.

I’m sat writing this post and wondering if I should even write it at all. It was a mundane appointment, I’m not saying that past appointments have been a joyous afternoon outing. But, so much had happened between my last appointment and this one. To recap: Azathioprine temporarily stopped due to low white cells, steroids, crippling anxiety due to steroids…you can see why I thought it would be at least a little bit interesting.

I sat in the little waiting room, an elderly lady looked at me in confusion. Then another lady entered and she also started looking at me. It happens a lot, they aren’t used to seeing a 23-year-old in a department typically used by older people. I can see them studying me, trying to figure out why I’m there. I could tell them why I’m there but seeing the confusion humours me whilst I wait.

The regular checks of weight and blood pressure were fine. However, my urine flagged up again, it did at my previous appointment. My consultant remembered this and asked if my water works were okay, I told him they were fine and he wrote something in my file (I can’t read his writing so I couldn’t tell you what). But, as he wrote he said “we need to keep an eye on you”. It was just a urine infection for which I have antibiotics for. I know urine infections are common in Lupus but it made me wonder (with him asking if my water works were the same) if frequent infections are an early symptom of kidney involvement. Just for the record: my kidneys are fine and performing perfectly well.

On this particular appointment, I felt awful. I was exhausted and sore in most of my joints, I told him but he didn’t say much but then again there isn’t much he could say. He’s very matter of fact that I have an illness that causes fatigue and pain. I also informed him that I recently had a butterfly rash, which he put down to the warmer weather we’ve recently had.

I asked “did my white cells drop because my body couldn’t handle the higher dose of Azathioprine?”. Interestingly, he nodded but also revealed that someone of my age should be able to handle 200mg of Azathioprine (my dose was 150mg). He also told me that when Lupus is active white blood cells tend to drop, so he believes it’s a mixture of the two. I’ve been curious if he would eventually try and increase the dose again but when I asked he said no and reminded me that we have to test different doses out to find the best one for me.

If everything remains stable for 6 weeks, my fortnightly blood tests can be moved to monthly. I next see my consultant in August, a little bit early but he’s going to Canada for a conference. He said he didn’t want to wait until he’s back because it would be too long in between appointments.

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