More Numbers, More Patience!

Another blood test, another visit to my GP, another set of numbers to crunch and digest. And more patience expected of me – never the world’s most patient person.

The bad news is that my platelets seem to be trending down as the steroid dose is reduced. The last four readings have been 153, 177, 149, and this week’s one, 127. While they’re still in the safe zone, above 100 (thousand), they are at the low end of safe, with the pathologist marking the last two readings as ‘mild thrombocytopenia.’

Alien Attack!

Of course, this then begs the question – why is my immune system intent on destroying my thrombocytes, and is there anything – other than destroying the immune system with corticosteroids – we can do to stop it?

It seems fairly likely that a virus infection, possibly the mild dose of ‘swine flu’ I had in October, triggered the immune system to view my thrombocytes as alien invaders to be destroyed quickly and efficiently. If they really were aliens – say, daleks or cybermen – I’d be very proud of my immune system, fighting them off with no sign of The Doctor anywhere close by.

But, wait – these aren’t aliens – these are necessary members of my corporeal community with important roles of their own! Apart from causing my blood to clot at any injury, my platelets also help wounds to heal. I just found out that their name, ‘thrombocytes’, literally means ‘clotting cells’ (Greek: thrombus – clot, cytos – cell).

What we need to do now is to find some way of getting my immune system to recognise that my platelets are on the same side of the war against the real, biological aliens – that they’re friends, not foes.

And in the meantime, keep the numbers up as the steroid dose goes down.

Unhappy Kidneys

I’m still peeing large amounts, but no longer vast cataracts of liquid, thank goodness. So my kidneys are gradually improving, but that funny, almost metallic, taste in my mouth that makes me want to suck peppermints all the time, is apparently a sign of the kidneys being damaged. Probably by the prednisone, but possibly by other lifestyle matters as well, such as my chronic irritable bowel.

The worst part of this, apart from a natural concern about the state of my kidneys, is that the taste in my mouth is affecting my enjoyment of coffee. Suddenly coffee doesn’t taste so good any more!

If my kidneys are still not happy next time I see the doctor, she will prescribe some herbs (Chinese or European, I’m not sure which) to cheer them up. These will probably taste foul, but I won’t know, until my kidneys are functioning properly and I no longer have that strange taste in my mouth.

Still on the Wagon

Apart from celebratory drinks with friends over Christmas, I haven’t touched any alcohol for three months. Not even on my recent birthday! I’m not a heavy drinker now I’m not in my 20s, but I do enjoy a glass or two or red wine with a meal, and/or the occasional whisky. In the summer, I like a Cinzano Rosso or Sec over ice.

Now, remaining teetotal, while not a huge struggle, is an ongoing disappointment. A gentle pleasure denied me by this stupid disease. So I’d hoped that the steroid dose was low enough at 1.5mg that I could be allowed a glass of red wine with my evening meal. I was even prepared to barter my daily mug of coffee for an evening tipple.

Nope! No way! In fact, the barter had to go the other way. My doctor was prepared to allow me my daily coffee (though she’d rather I didn’t) in return for a promise to stay off the demon drink. I was tempted to quote St Paul’s advice to her: “take a little wine for thy stomach’s sake” , but I don’t think she’d have been amused. (Besides, modern translations probably say 'non-alcoholic wine', and what’s the point of that?)

It seems my poor body is not strong enough yet for strong liquor – not even an environmentally friendly and very smooth blend of South Australian shiraz and merlot.

Weaning Ever So Slowly

What with the kidneys, and the headaches I've had off and on, and the lethargy/feeling like a lump of lead, or the days when I can't stay awake, it seems I'm still cutting down the steroids a touch too fast. So instead of going from 1.5mg to 1mg this week, I have to take a smaller jump - more of a hop, really - to 1.25mg. I'll need a pill cutter for this, as the 1mg tablets are hard enough to break in half, let alone quarters.

This extra step adds at least another week to the 'getting off the bloody steroids' timetable. Maybe by the middle of March?

Now to the good news

Yes, there is good news, despite all my whingeing. While my weight remains the same, there are more days when I can get into my baggy green pants, and even occasionally squeeze into the stretch jeans (hiding my muffin top under a loose shirt or smock). Various swollen bits are going down – my bras almost fit, my face is a bit less pumpkin-like, and yesterday’s great achievement: I could get my feet into a real pair of shoes again!

The hot, steamy, tropical weather has ended too, with the start of early autumn. The humidity has gone, there is less bite in the sun, but it’s still gorgeous weather. Though this has no connection with weaning off the steroids, or being good about staying off the booze, it has certainly improved my psychological and physical ability to deal with both of those!

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.