Time for a re-evaluationOver the past two weeks my platelets have risen quite nicely, and so far have stayed up. My doctor and I have continued reducing the steroid dose, and this week agreed to stretching the weekly blood tests to fortnightly. It's official - my condition has "turned around, stabilised" - at least for now.
On Wednesday she and I had a serious discussion about what we've learnt over the past three months, and what direction we - or more importantly, I - want to take on this journey with my auto-immune disease.
After I'd done all the research I cited in my last post, I sent her the link to Crystal's story, requesting her views on the haematologist's comments, which I'll quote here: "The goal for treatment of ITP is only to treat or prevent bleeding. There is no other goal. The platelet count tells us something about the risk for bleeding, but even patients with very low platelet counts for a very long time may have minimal bleeding symptoms, or none at all. "
He went on to say "patients with ITP who have very low platelet counts are often treated with many different medicines even though they have never had any significant bleeding. And the outcome is often that the treatment of ITP is much worse than the disease."
I'm a little bleeder
Readers of British background and those of us who watch British tv shows will get my pun. It seems I'm actually a low bleeder. Even when I was down to 12 recently, I had very little spontaneous bruising, just a couple of smallish marks on the backs of my thighs. When my gums bleed while I'm cleaning my teeth - maybe once a month - the bleeding stops as soon as I swirl my mouth with icy water. If I cut myself, it stops after a couple of minutes pressure or a tight bandaid. Even when the regular pathology nurse is away, and the replacement nurse is a little clumsy, I only lose a few drops of blood, although the blood flows fast enough into the vials while it's being taken. So even with low platelet numbers, my blood does apparently clot fairly rapidly.
Doing the numbers
My doctor cautioned me to remember that platelet numbers quoted in the US studies such as Crystal's Story, are not directly comparable with Australian or UK numbers, because the measurement systems are different. Australian and I believe European systems (which would include UK), measure platelet numbers at10 to the power of 9 per litre of blood. So even when I was down to that scary 12, I actually had around 12.000,000,000 platelets in each of my approximately five litres of blood. And they seem to be doing their job, even though the average count should be 150-450 (times 10 to the 9th).
What we learned
Living with an auto-immune disease is a daily experiment, with an experimental sample of one, since no two people have exactly the same physical, emotional, psychological or spiritual experiences, even if they share the same disease. And like the good haematologist, Dr James N. George, who is Professor of Medicine, Hematology-Oncology Section, Department of Medicine, Department of Biostatistics & Epidemiology, College of Public Health at the University of Oklahoma Health Sciences Center, my doctor believes in listening to the patient and learning from their experience. This is what we've learned from the past three months:
1/ I can crash while feeling really well, without any warning signs and no clear reason why;
2/ During a crash, applying high doses of steroids doesn't have much effect, but when it turns around, small doses are quite effective;
3/Just when you think you know what to expect from the illness, something changes. "Welcome to the wonderful world of auto-immune disease."
Where to from here?
Over the next few months we will continue to reduce the steroid dose, with aim of weaning me off steroids altogether. Maybe not by Christmas - a goal we've aimed for each year for the past three years - but some time in the next six months. Then the next phase of the experiment will begin. Living on the edge - life with ITP without corticosteroids. The safety net will be IV immunoglobulin and/or platelet transfusion if I get dangerously low.
But that's a while down the track. Right now, it's enough to know I've stabilised again, and we can get back to weaning my body off those horrible steroids.
Reasons to be cheerful
All of the above, my lovely family, good friends, and a new writing course I'll be starting next month.