Pumpkin face

I’ve reached the end of my first week of learning to live with ITP, doing my research and observing and experiencing the side-effects of the steroids, as I continue to try to run my small business.

Firstly the good news. My platelet count is currently 169,000, and my haematologist has cut my oral prednisone back to 40mg for this week, with permission to drop it to 30mg next week, until I see him again in a fortnight.

The bad news – well, it isn’t really bad, just annoying – is that, while I’m experiencing many of the common side-effects many people suffer when taking oral steroids, I’m not enjoying the psychological benefits.

When I mention I’m on steroids, people say to me ”Oh, you’ll have lots of energy and a sense of euphoria!” I wish!

I actually have less energy – not a major drop, but enough that I notice it – and while my mood is positive, there’s no way I’d describe it as euphoric.

I know I’m benefiting physiologically – my platelet count is rising, and I’m no longer at risk of major internal bleeding. Believe me, I’m thankful there is medication I can take that is effective!

Annoying Side-Effects of Prednisone

These are the side-effects I’m experiencing. They may differ for other people.

• The swollen “pumpkin face” or “moon face”, which can get quite hot and tight

• Shakiness, especially 1 hour after taking my daily dose, but also at intervals during the day

• Reduced energy levels

• Occasional palpitations or tachycardia, especially at night

• Disturbed sleep – finding it hard to get to sleep, or to go back to sleep after waking in the night

• Irritation of my hiatus hernia below my oesophagus, generally in the evening, but occasionally during the day

• The brain stops working, briefly, mid-sentence, or mid-thought.

Consequences of Long-Term Oral Steroid Use

There are also some concerns about the effects on the body of long-term use of oral steroids. If I do have chronic ITP, then it’s likely that once every year or so, I might have to have a couple of months of steroid medication.

These consequences can include:

• Some shrinking of the adrenal glands as their burden of producing cortisone has been relieved. This is managed by reducing the steroid dose slowly. To allow the glands to take over again.

• Increased susceptibility to infections, as the cortisone is damping down the immune system

• Muscle weakness

• Osteoporosis from reduced calcium absorption (here’s some bone density info from MedSafe)

• Aggravation of existing conditions such as diabetes, glaucoma, and high blood pressure

• Increased cholesterol and triglyceride levels in the blood

• Weight gain and uneven distribution of weight, so a swollen face and belly with thin arms and legs

• In some cases, the skin becomes fragile, leading to bruising and even tearing

• Psychological side effects include irritability, agitation, euphoria or depression and insomnia.

So the challenge will be to get the very real benefits of the prednisone, while minimising or blocking the equally real dangers. Like much of life, it’s going to be a balancing act!

TCM – Traditional Chinese Medicine

I have been sent a clinical article on the use of Traditional Chinese Medicine in treating ITP.

It’s very interesting reading, but with my western science background, the concepts expressed are a little strange. Not entirely unfamiliar to me, as I have interviewed veterinary practitioners of TCM and other alternative therapies, but just not in my immediate conceptual comfort zone!

However, TCM herbal therapy seems like a real possibility in the strengthening of my body to deal with the long-term steroid effects, so I plan to investigate it further over next few weeks.

ITP- what on earth's that?

Last week I had a bad fright – or maybe it was wake-up call. I was discovered to have an extremely low thrombocyte (blood platelet) count, in the order of 5,000 per cubic millimetre of blood instead of the healthy 150,000 – 450,000. At such a low level, my blood almost had no clotting ability at all, and had I fallen or been involved in a road accident, I was in serious risk of major internal bleeding, intercranial bleeding or a cerebral haemorrhage (stroke).

I’d had no symptoms, other than some strange bruising. I bruise easily, but usually remember hitting myself or bumping into something and thinking “now I’ll have a bruise”. These just appeared, almost overnight, so I mentioned them to my family doctor when I went to get some prescriptions renewed.

No big deal, I thought. Had a blood test, went off to do some shopping, carried my groceries home – a nice walk of about a kilometre through a local park - and worked at my desk all afternoon. That evening I was rushed to the ED, as soon as my disastrously low blood test results came through.

So a week later, after excellent care in one of Australia’s best teaching hospitals – Sydney’s Royal Prince Alfred (RPA) - I’m now facing the likelihood that ITP (idiopathic thrombocytopenic purpura, aka immune-mediated thrombocytopenic purpura) is going to be a part of my life. If I’m really lucky, this will be a one-off event, and when I’m weaned off the steroids in 10 weeks’ time, it will go away and never come back again. Be the idiopathic thing: “idiopathic” means “no-one knows why”.

But we won’t know. We’ll have to keep checking, every few months.

Because, given my age (61) and the fact that I’m a woman, it’s more than likely this will be chronic ITP – the auto-immune version that comes back every so often after the immuno-suppressant effect of the steroids has worn off.

I didn’t know anything about ITP before last week – had never even heard of it, so I looked it up. (It helps being a health and science writer, I’m good at finding information). Here’s the broad info from Wikipedia, and here’s the Mayo Clinic’s rundown of treatments and drugs.

I’m heartened by the link on the Mayo page to Lifestyle and Home Remedies – it looks like there will be some diet and exercise ideas I can follow up to improve my overall health while taking steroids. I already know I have to protect my liver – no alcohol, and decaff instead of regular coffee – and I will need to up my calcium intake, as prolonged use of corticosteroids can cause osteoporosis.

But first, let’s find out what my platelet count is after I see my haematologist next week. Will I hit 150,000?