Reaching four years
In a couple of weeks I'll reach the fourth anniversary of being diagnosed with ITP. I am almost adjusted to living with a chronic autoimmune disease. I say almost, because last week I had to see the haematology professor for the first time in three and a half years, since my GP took over managing my condition. Most of those four years have been documented in this blog.
But as it was coming up to that anniversary, and my platelets had dropped quite low after my wonderful holiday in the US, my doctor and I agreed it was time to get some advice from the haematologist. Having worked out that I'm not a bleeder and that I'd like to risk life on no steroids at all, eventually, I was nervous about this visit, convinced I'd be forcefully advised to stay on the prednisone, or if not, some other unpleasant, and to my mind unnecessary, treatment. (The professor and I had not really hit it off during the time I'd had to see him for weekly visits!) I took my latest blood test results as requested (platelets 29, everything else good, apart from the kidneys, from not drinking sufficient water in our very hot spring weather).
To my relief I was not seen by the professor but by his registrar, a younger woman doctor who listened to me and my arguments for not having treatment after the prednisone weaning. She agreed that four years on steroids is too long, given the bad effects on my bones and skin and adrenals. Then she quietly and patiently explained what treatments I would need, in hospital, if my platelets dropped below 10.
10 is my new danger line
My doctor and I had had agreed on 20 as the number at which she would advise me to go to the hospital ER. But when I came back from Boston and we discovered I had dropped to 18, I was clearly so healthy - none of the nasty flu, stomach bug or other winter ills going around - that she just advised taking extra care to avoid accidents and we boosted the steroid dose again.
The haematology registrar explained that below 10 was dangerous because, as well as the risk of internal bleeding from a fall or a blow to the head or abdomen, there was the scarier risk of spontaneous internal bleeding - blood leaking into the brain or internal organs. Now that IS scary! I was quite happy to agree with her that if I did drop below 10 during or after the weaning, I would go immediately to the ER, and receive intravenous immunoglobulin, and then go on weekly infusions of rituximab for a month.
50 is my new target
It's unlikely I will ever get back to normal platelet numbers, short of spontaneous remission, so although it would be wonderful to have platelets in the 150+ range, that's not a realistic goal. "It would be lovely if we could get you sitting around the 50 mark," the registrar said. I have been over 50, but I was on a relatively high steroid dose. "39 or even 29 are quite good figures for you." So 50 is a goal to aim for, but not to be too distressed if I don't make it.
I see the professor in a month, by which time I'll be down to 4mg of pred a day. A milligram a month means it will take three months to get down to 1mg, and then we'll be reducing carefully by halves and quarters, as that last milligram is the hardest. Three years ago I reduced too fast, my adrenals could not cope with the steroid withdrawal and produce enough cortisol to compensate, and I ended up with adrenal exhaustion. I'm determined not to let that happen again.
On the bright side
I'm disgustingly well. I still haven't caught any of the nasty viruses going around, despite people coughing and sneezing on buses and in doctors' waiting rooms. My spring vegetables are growing really well on my balcony, so I'm eating fresh lettuce and rocket and spinach every day.