Ups and Downs but Not a Rollercoaster

The infrequency of posts to this blog reflects the fact that, by and large, I have been reasonably well over the past couple of months. It’s true I find the winter cold weather much harder to tolerate than before I developed ITP, but friends and family know I have always been a bit of a wimp about cold weather, being temperamentally a lizard (or a cat).

Despite my doctor’s gloomy prediction a couple of months ago that I would be “a magnet for colds”, I have not actually come down with one, even though I travel regularly on public transport and have exercise sessions at a hospital gym with a group of COPD (chronic obstructive pulmonary disease) sufferers who frequently cough. It’s true, I’ve had days when I’ve felt distinctly unwell, and likely to develop a cold or even flu, but the slow release Vitamin C and the daily doses of cordyceps seem to kick in and protect me from the bacteria to which my low Ig2 levels make me susceptible.

Weaning Prednisone woes

But it’s not been all plain sailing. I have still lost far too many days, especially through the end of June and up to mid-July, from an unexpected reaction to weaning off the steroids. Back in May, I was comfortably on 3.5mg, having dropped 0.5mg a month without any obvious difficulties. My platelets rose steadily, the cortisol levels a little more slowly, but all was going swimmingly.

Then bang! Two and a half weeks after dropping to 3mg, I had the sort of reaction I used to get in the mornings after taking a high dose of around 20 mg – no energy, feeling absolutely chilled, no brain, shakiness, palpitations. Some days this lasted from 8.30 am to around noon. On really bad days it hung on until 2pm, and all I could do was lie on the sofa, wrapped in a blanket, hugging a hot water bottle, until I felt my energy rise and knew it had passed for the day.

Weaning Prednisone – low doses are hardest to get off

When I saw my doctor three weeks ago and complained of this horrible reaction, she checked my pulse, my heart rate and my blood pressure. All normal, even though I could still feel the shakiness. My platelets were beautifully high at 118, my cortisol levels were up to almost 50 per cent of normal, all my other blood indicators were good.

So why the lack of energy, the hammering heart, the shakes, the fuzzy brain? It’s partly due to adrenal fatigue though thankfully, I’m not completely exhausted as I was 12 months ago. The adrenals are just finding it harder to take up the slack when the steroid dose is reduced. As with adrenal exhaustion, once my energy came back in the afternoon, I was awake and raring to go in the evenings.

The lower the dose of steroids, the more likely there are to be adverse reactions, particularly if you’ve been on steroids for longer than a few weeks or months. I’ve been taking prednisone for 19 months. My body has, in a sense, become addicted to it, and my adrenals can’t always make up the shortfall when I cut the dose back. So, after my check-up yesterday, when the platelets have dropped back to 90, and the cortisol has slipped a little, we’re doubling the dose of cordyceps to give my energy levels and adrenals an extra boost.

On the bright side

Although my platelet count has slipped a bit, it’s still on 90. Twelve months ago it was around 40. As recently as May, it was yo-yoing around 45-50, and it seemed I would never get above 50. Ditto with my cortisol levels. Twelve months ago I was like the walking dead. Friends had to do most of the packing cleaning and unpacking when I moved house, while I lay on the couch “supervising”.

So, OK, I’ve had a few weeks of shakiness, palpitations, shivering etc, but they’ve gradually improved, and I‘ve had many days when I’ve felt and sounded almost normal. I’ve been able to work on my short stories and send them to competitions, I’ve written blogs, I’ve commented in online discussion groups. I’ve even joined a couple of actual social groups that meet in coffee shops, as opposed to online.

The magpies are warbling, the sun is shining and the magnolia tree outside my window has started flowering.