Doing the Numbers

Well, the numbers in my blood tests go up and down like my belly - which a couple of weeks ago shrank so I could fit into my baggy green summer pants, and this week swelled again, so I looked 6 months pregnant in anything that would actually go on and was decent enough to wear in public.

My platelet count is yo-yoing with every blood test I have – 202, 153, 177, 149. My doctor says not to worry at this stage – I’m going down through the steroid dose so fast that it’s not surprising that the thrombocytes are bouncing. The crunch will be when we get me right of the prednisone, then we’ll see which way the platelets are heading.

And my weight – is that going up or down? It’s certainly up since I was last weighed, coincidentally on the day I was later rushed to hospital. Then it was 67kg (148lbs, 10.5 stone). Now it’s 73kg (161lbs, 11.5 stone). In three months I’ve put on a stone in the “old language”, or 6 kilos. Six kilos!! It feels more like 10! But as this is the first time I’ve been weighed since starting the steroids in November, I don’t know if my weight is increasing or decreasing. Clothes are no longer a reliable guide to body size!

Other Good Numbers

I'm pleased to see that my sodium levels are back to normal (no more salt tablets), as are my calcium, magnesium and sodium. My kidneys are still struggling, but are better than they were.

While my total cholesterol levels are really quite high, they’re coming down as the steroids go down, and my haemoglobin, which had dropped just below the normal range, is back up where it should be.

Slow Down, You Move Too Fast

For the past few weeks I’ve had relatively easy run dropping the steroid dose by 1mg every few days. But as I’ve got closer to the magic number of 1mg a day, the trip has been increasingly bumpy, and my doctor warns me to slow down, I’m going much too fast as I try to wean my body off it’s dependence on corticosteroids.

This week, as I’ve come down from 4mg to 3mg to 2mg, the bad reactions in the morning have returned, and I’ve lost two whole days to palpitations, shakiness, lethargy and headaches. (The hot and very sticky humid weather we’re having hasn’t helped either!).

Now I must go back to driving slowly and cautiously, as on a narrow, winding, mountain road, with my fog lights on, and a possible milk tanker or log truck up ahead. No more nipping along with the top open, whistling cheerily as I zip around the downhill curves.

In other words, I must stay on this 2mg dose for a week, before cutting back by half a milligram to 1.5mg for another week, before even thinking about getting down to 1mg.

Vitamin D Revisited

Last time I saw my doctor, she told me to stop taking any Vitamin D supplements, and attempted to explain to me about the different forms of Vitamin D.

I have reread the article on Vitamin D she recommended, and it’s moderately scary stuff.

For starters, it seems that ‘Vitamin’ D is not a vitamin at all. According to the molecular biologists at the Institute of Biomedical Research in Birmingham, England, it’s “a potent immunomodulatory seco-steroid” - a steroid-like molecule which is able to control the activity of the immune system. When taken in high doses, it is an immunosuppressor – as if I needed another one!

There are other interesting facts highlighted in the article, with links to clinical studies and peer-reviewed papers. For instance, that normally healthy people and even chronically ill people are not deficient in ‘Vitamin’ D, and don’t need high doses of this seco-steroid.

And, importantly, that ‘Vitamin D’ does not stop osteoporosis.

This is research I’ll need to keep an eye on, as there is so much emphasis currently on getting enough ‘Vitamin’ D for its suggested health benefits, especially for people over 60.

Meanwhile, I will take my foot off the steroid reducing accelerator and practice patience instead.