I have been diagnosed with Cerebral Lupus in November 2014 and have been taking Mycophenolate Mofitil (Cellcept) since then to prevent further brain lesions. Originally I was on a dose of 1g bd, which increased to 3g bd in September following a week in hospital. Since then I've been catching every cold/flu going and my recent blood tests showed my neutrophil count to be 0.7 and my white blood cell count and serum creatinine were just under the low end of the nornal range too.
My neurologist has said that these numbers are what he would expect and I am to continue taking the same dose of mycophenolate. I have another blood test in a couple of weeks to check the neutrophil count again. This is the first time that my body has started to show inward signs of the adverse effects of mycophenolate. Since now my bloods have been within normal ranges.
Has this happened to anyone before? What will happen if the count falls below 0.5 and I'm considered severely neutropenic? I have to travel by tube everyday to get to work and I can't risk getting sick but I also can't risk losing my job by not going to work!
Would they consider treatment to bring the neutrophil count back up? In my mind it's ridiculously irresponsible of them to leave me with my count so low for such a long period of time.
I read that life expectancy with febrile severe neutropenia (<0.5) is 2 weeks. I CERTAINLY do not want to risk this happening so I'm constantly washing my hands, maintaining excellent oral hygiene and staying away from anything sharp! But there is only so much I can control.
I'm genuinely worried, especially now I've come down with what feels like a mega cold and my sinuses are aching. 😞😞😞
Thanks in advance.