A Beautiful Number

When former Australian Federal Labor Treasurer, Paul Keating was what he described as “the Placido Domingo of Australian politics”, he would often speak lyrically of “beautiful numbers”. Yesterday, I had a beautiful number of my own.

I’d had an absolutely crap 10 days, with each successive day seeming worse. I’d developed a heavy cold the day after taking part in the Walk Against Warming, and was already aware from my previous visit with my haematologist that my thrombocytes were disappearing again. On December 11 they had dropped to 119,000, and the professor warned that if they kept dropping, he would have to put me back into hospital to administer more IV immunoglobulin, and probably do a bone marrow test to see what was going on.

So by yesterday, December 23, I was feeling so wretched – absolutely no energy most days and no brain power either – that I was convinced they must have dropped to 60,000 or less. I even put myself under “house arrest” for the last 3 days, (apart from friends taking me downstairs to the coffee shop in my apartment building), terrified that if I went out on the street during the Christmas shopping frenzy I’d get knocked over and start bleeding internally.

Not only had I convinced myself, but also my family and close friends, all of whom were very worried for me.

When I saw the professor after my blood test, and he asked how I was feeling, I replied, gloomily, “I’ve felt better.”

“No.” he replied, “You’ve felt a lot worse. Your platelets are up to 193,000. You’re almost back to normal.”

So I poured out my sad story as he sat there, grinning broadly. He had the decency to acknowledge that I had indeed suffered, and explained that most of the misery would have been from the cold, exacerbated by the still-annoying steroid side-effects – most especially the lack of sleep.

The Good Things About Taking Steroids

So, in acknowledgement of the very real benefits I’ve received from my daily prednisolone this past couple of weeks, I’ve decided to list the positives:

• My thrombocyte count is almost back to normal
• I don’t have to spend Christmas in hospital, eating incredibly bland food & having daily blood tests and IV transfusions
• I'm up so early, I can watch the daily miracle of the dawn from my balcony, really conscious of the earth rolling from east to west as the sun rises over the tall gum trees behind the university
• Being up so early, I have time to do some stretches & gentle exercises before breakfast
• My eczema is temporarily suppressed - I can eat foods from the nightshade group- tomatoes, capsicums and chillis, that would normally bring me out in a rash within half an hour.
  At last my homegrown basil can combine as it should with fresh tomatoes for the perfect vitamin-rich summer salad!

A Christmas Break

Since my haematologist thinks I’m safe until I see him again mid-January, (so long as I’m sensible), and has given me permission to travel, I’m able to accept my friends’ invitation to spend a few days with them and their cats over Christmas in the beautiful Blue Mountains town of Katoomba.

Waiting for Guinness

There's a local indie duo called Waiting for Guinness which plays pubs around Newtown and the innercity. They have a rough, thrown-together sound, fresh and rocky, which I quite like. But it's their name I like more. When you order a Guinness, you know there'll be a time while the drink is 2/3rds poured, when all you can do is wait for the thick, foamy, capuccino-like head to form, before the bar staff top it up with the last third, & you can take your first suck of the glorious brown stuff.

I thought I was waiting for Guinness in terms of not getting to see the TCM herbal doctor until just a few days before Christmas, but it seems this pint of Guinness has more ingredients than that.

I had a blood test today and then saw my haematologist, and the news is not as good as I'd hoped. Instead of my thrombocyte count increasing, or at least levelling off, it's started dropping. I've lost 50 points, from 169,000 three weeks ago to just 119,000 today. I'm still within the safety zone - just - but I can't afford to slip any further. As a result, the professor only reduced my steroids by 5mg to 25mg/day, instead of to 20, as he'd hinted, & I have to go back for another test the day before I see the TCM practitioner.

If my thrombocytes are still dropping, I might have to have another stay in the RPA to get more IV immunoglobulin pumped into me.

Meanwhile, the side-effects of the still high-doses of prednisolone continue to accumulate, with each day finding me slightly more of an invalid than the day before.

A typical 24 hours on steroids

Wake at dawn (approx 5.40 am), thanks to an east-facing window over my bed
Bath or shower, feeling moderately OK. Consider going for a walk or a swim. (Some days I actually achieve this!)
Make breakfast, eat, take my steroid dose and the first of my two calcium & Vitamin D supplements.
7.30: Sit on my balcony among my herbs and wait for the reaction, which starts less than 15 minutes after the medication: heart pounding, shakiness, energy drops right away, eyes blur.
Doze until 8.30 or 9.00 when the energy levels start to rise a little.

This time resting among the bright green of my herbs and listening to the magpies carolling in the street trees is a gentle joy, which I know is doing unmeasured good. There is clinical evidence for the benefits of enjoying nature.

9.00: Wash up - this task of one day's dishes of one person can take at least an hour. Use bathroom, make bed.
Mid-morning: check emails, attempt to read online media, blogs, etc. Reading on the computer is easier than on the page, as I can pump the screen font up really big to compensate for sore, blurry eyes.

COFFEE! the high point of the morning!

After the saving draught of strong coffee, my brain finally feels like it has woken up, and I can plan what I'm going to attempt for the day. Either go for a short walk or settle to read all the online research I can find on today's writing topic.
Lunch: salad with some protein & two slices of bread. Fruit or yoghurt.
2.30pm: Feeling almost normal, and able to work at only about one-third my normal speed, I manage to put in maybe three hours writing web articles or blogging.
5.30-7pm: Make dinner, a proper cooked meal with lots of steamed vegs and egg, meat or fish. Take 2nd calcium & Vitamin D Supplement.
7-10pm: Television; with a hot drink midway and a Nexium tablet to counteract the sharp stabbing pain in the hiatus hernia which the steroids cause at night.
10-10.30pm: Bed.
1am, or if I'm lucky, 2am: Wake up, pain in chest, heart pounding, brain spinning. Mad thoughts - lists of things to do, blogs to write, jobs to do around the apartment. Nothing for it but to sit up & read, my eyes having rested enough that they sort of focus. Read for one or two hours, concentrating carefully on the story until the brain stops spinning, and the heart and chest settle down. Go back to sleep.
5.40 am: Wake up with the dawn & start all over again.

The Guinness ads in the the old Punch magazines from the 1960s used to say "My Guinness - My Goodness!" and "Guinness is Good for You!" How tempting! Maybe I'll drop off the wagon and try a Guinness tomorrow.

Hail Coffee! Saviour of my Day

I’ve been feeling rather low and grumpy today, thanks to next to no sleep last night – new side-effect, muscle cramps in feet and ankles keeping me awake – and very low levels of energy and brain power. Plus my credit card got eaten up by an ATM because I typed in my PIN wrongly!

Craving a coffee to wake my brain, I thought I’d better check out the bad news on coffee drinking and liver function. Drinking alcohol stresses the liver (not that I’ve had any for over three weeks); guaranteed coffee will do the same, right? Wrong! I found a Medscape article describing various recent clinical studies that show drinking up to four cups of coffee a day can actually improve liver function!

This is great news, as yet another of prednisone’s annoying, possibly dangerous, side-effects is the risk of liver inflammation, which can be recognised by an increase in the liver enzymes alanine aminotransferase (ALT) and aspartate aminotransferase (AST).

According to this information on liver function tests, ALT and AST are enzymes located in liver cells that leak out and make their way into the general circulation when liver cells are injured. The ALT is thought to be a more specific indicator of liver inflammation, since the AST may be elevated in diseases of other organs such as the heart or muscle. ALT and AST are often used to monitor the course of chronic hepatitis and the response to treatments, such as prednisone and interferon.

As well as other liver enzymes, the study by Tanaka et al quoted in the Medscape article also investigated the potential relationship between coffee consumption and ALT and AST. Once again, coffee intake was significantly related to decreased serum concentrations of both enzymes. While it’s not yet known which compound is doing the good work, something in coffee is protecting the liver cells.

Skinny bones and Not Enough Vitamin D

As well as being short – 5 foot 3 inches “in the old language”, I have very fine bones. I used to think they were elegant, and a sign of noble breeding, blue blood(!). Now, I look at them as fragile, and potentially hazardous. I already have a history of broken toes, and a family history of osteoarthritis and osteoporosis among my older female relatives.

Knowing that the steroids can lead to bone thinning and reduced calcium absorption, I discussed calcium supplementation with my GP. She sent me off for another blood test – this time to check my Vitamin D levels. Another curse of being a woman over 60 is that we can’t make as much Vitamin D through the action of sun on our skin as we used to, no matter how much of a lizard I am, and how rarely I wear sunscreen or long sleeves.

Vitamin D is converted from cholesterol in the blood by sunlight and helps increase calcium absorption in the intestine, which builds stronger bones. Australians should be able to receive about 90 per cent of their intake from sunlight production. Experts are now warning older people not to do so much of the ‘slip, slop, slap’, sun protection routine of sunscreen, shirts and hats.

I’m not sure if it’s just us older women who lose the Vitamin D making ability or older men as well, but anecdotally, more women suffer hip fractures from osteoporosis than men.

So, the blood Vitamin D results are back, and yes, I have only 50 per cent of the serum levels that I should have. I’m now taking a calcium supplement fortified with Vitamin D.

Chinese Herbal Medicines

I’ve made contact with a local GP who practises both western medicine and TCM and has treated at least one other patient with ITP. Unfortunately, she can’t see me for another couple of weeks.
I’m hoping to be put on a course of TCM herbal remedies to help strengthen the liver, increase absorption of calcium from my diet, improve my Vitamin D making abilities, stop the muscle cramps, shrink my face, unblur my eyes and give me a good night’s sleep.

In the meantime, I’m off to make myself a pot of coffee!

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?