My immune surpressants have been stopped.

On Saturday (07-04-18), I received a letter with the test results from my last Rheumatology appointment, bare in mind, the appointment was on the 15th March. The letter informs me that my white cell count remains too low to carry on with the Azathioprine but this is only a temporary measure. I need weekly blood tests whilst the levels return to normal and once it has I can resume the treatment but at a lowered dose of 125mg.

I spent Saturday feeling angry that I had been informed of this nearly a month after the appointment and in that time I had been unknowingly taking a medication that is potentially causing more harm than good. Not only did I feel angry but I felt a little upset because it sometimes seems like I can only get so far until I’m knocked back again.

I’m filled with dread because I’m now under medicated for Lupus, my treatment for now is just 200mg of Hydroxychloroquine and that’s not enough to stabilise me. I had thought about upping the dose to 400mg myself, but I realised that would be a rather stupid thing to do without a doctors consent. This morning, I went to see my GP regarding upping the Hydroxychloroquine dosage…it was a no go. It was a gamble anyway, he’s not in charge of my Lupus medication. But, there was a couple of other reasons: he doesn’t want to mess with my important meds and we don’t know how quick my white cells will take to return to normal, it could take as little as a week. But, that still doesn’t make me feel less dread, I’ve felt Lupus at full throttle before and it’s less than pleasant.

My last dose of Azathioprine was Friday (06-04-18) and according to my research, it should be out of my system by now. My GP and I decided my first weekly blood test should be Friday – a week from my last dose.

I’m not looking forward to climbing the blood test ladder again, I just can’t seem to surpass the 3 month mark and that’s frustrating to me. I’m just hoping that my levels return to normal quickly. My GP is going to call me with the results and if they are still low, I’m going to try and get in contact with my consultant in regards to upping the Hydroxychloroquine. I’m not prepared to be under medicated for longer than I need to be.

I’ll keep this blog updated with everything. But, if I’m honest, all I think it is, is my body not enjoying the higher dose of Azathioprine…life with a chronic illness keeps you on your toes!


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