By the 10th of January my Prednisone had been reduced to 10 mg and we had a plan in place to ween me off the steriods. My blood results showed my platelets were holding steady and the levels increasing. I seemed to be sitting pretty.
I was to take the 10mg dosage for 4 weeks then, all things going well, drop the dosage to 9mgs for another four weeks and so on.
On Wednesday 2nd of Feb a friend and I were out and about, making our way slowly to the book launch of a local writer. We were sitting in her car and I was doing my makeup in the sunshade mirror (as you do) when I noticed a rash of tiny petechiae on my neck and creeping down across my chest.
Up until then I'd not noticed anything so it had come on pretty quickly. I mentioned it to my friend and she offered to take me in to the hospital for a blood test. This we did and I was in and out in about five minutes.
Forty-five minutes later my cell phone rang. My heart leapt into my throat when I recognized the distinctive accent of my hematologist. Obviously something was very wrong.
My platelets had dropped from 185 to 23 in little over a week.
As calmly as I could I asked her what we should do. She advised me to double my Prednisone to 20ml and to go for another bloodtest in a week. It would take my body about five days to process and respond to the increase in my steroids. However, if I things got worse (unstoppable bleeding or very nasty and unexplained bruising, etc) I was to go for a bloodtest or to go into ED.
In the days that followed I had a little gum bleeding but nothing major. By the following Monday I had smatterings of tiny red petechiae all over me, especially down my calves and around my ankles. I was also becoming dotted with small brown and purple bruises on my legs, none of which I could account for.
On Tuesday evening I discovered a patch, about the size of an old fifty cent coin, of closely placed bright purple petechiae, each about the size of a pin head. I found another much larger purple patch on my chest. I'd never had anything like this before and it startled me.
I wasn't due for my blood test until Thursday but it seemed to me that I wasn't improving so the next morning, Wednesday, I took myself off to the lab for another test.
When I phoned my hospital nurse later that day it was to discover that I was right. My platelets had continued to drop. I was now sitting on 5!
Within 45 minutes my hematologist was on the phone instructing me to come in for an infusion of Immunoglobulin (a blood product of platelets).
It seemed we were back to square one.