William is relapsing. He had one day of remission. One day. What’s the point of one day of remission? Now instead of feeling hopeful that we are working towards remission we are just left with the thought that the ciclosporin is not going to work for him.
Ten days ago his nephrologist called me. ‘His kidney function has declined a bit. It could just be because he’s been a bit unwell. Or it could be because the ciclosporin is causing nephrotoxicity*.”
She paused to let this news sink in because they are not words that parents want to hear.
‘We’ll decrease his daily dose,’ she went on. ‘We’ll also taper his prednisolone again to 30mg alternate days.’
And because of one or other of those things, we are now facing a relapse.
*********
*damaging the kidneys while it’s trying to fix the kidneys
Am so sorry to hear that. I’m keeping my fingers crossed for you that you will get some more remission very soon.
Hugs and prayers as always xx
Just found your blog via More Than Just A Mother, my sister took ciclosporin and is a renal transplant patient, hanging in there with you and will check in to see how things are going MH x
My empathy for the side effects of the pred – I certainly didn’t like them (either when I was on them or when my kids are on it).
Oh Ella – I’m so sorry. Thinking of you and sending you masses of love x