Wake up call - part 2

Well, the cold was a fizzer - it wasn't a cold but a seasonal allergy,
as I suspected when despite frequent explosive sneezes, my 'cold'
didn't get any worse.  So, the next blood test showed a truly horrific
12.   Luckily for me, despite horribly wet and at times windy
weather, I hadn't fallen over or been knocked down, although I had
a couple of small bruises which I couldn't remember getting, and
my gums weren't bleeding. Time for the big guns, to arrest the slide
before I did get into danger.

We decided on a steroid pulse, a quick in and out to hit the immune
system without upsetting my adrenals. First night it was 50mg -
100 times the dose I'd been on for the past four months. The
second night it was 25 mg. By then I was starting to feel side-
effects: palpitations, indigestion, discomfort in the hiatus hernia in
my oesophagus, inability to get back to sleep after going to the
toilet.  In the morning, before my next blood test, I felt some
shakiness and was a little slower than usual.

That blood test was encouraging. My platelets went up two and a
half times to 30. I saw my doctor the next morning - a day of
flooding rain and very slow traffic - and we dropped the steroids to
15mg, with a maintenance of 10 mg/night until my blood test next
week. By then there's a good chance the platelets will be up north
of 50, and we can breathe easy again.

Back on the Chinese herbs

Although the platelet number was encouraging, my haemoglobin
levels are still low, and so are my sodium levels. I had low sodium
back in January 2010, & I was encouraged to put salt on my food.  I
invested in a salt grinder and some lovely sea salt crystals, while
keeping the iodised powdered salt for cooking, as I need to
maintain good iodine levels. This time, we noticed my sodium levels were down at the same time as the haemoglobin. There might not be a connection, but it's worth looking up. Back then, my
antihypertensive medication was implicated, and since then I've
been put on a daily paracetamol dose to relieve arthritis pain. I
thought that might have contributed to the sodium loss, but the
reverse is the case. There are warnings against too much sodium in paracetamol preparations

To boost the haemoglobin, protect me from the worst of the higher
steroid doses and generally assist my nutritional profile, I'm back
on the Chinese herbs, twice a day for two weeks. I have no idea
what they are - a list of 10 Chinese herb names that meant nothing
to me, as I only know European and Australian herbs.  But they
taste like the ones I had back in March 2010  and are actually quite drinkable, so I think they're the same mix.

On the bright side

The drenching rains of the past two weeks have stopped, and we
have sunshine,blue skies and mild temperatures (18C in the middle
of winter). The snow peas and rocket I sowed a month ago are well
advanced, the everlasting spinach is still going and my geraniums
are still flowering. Being mostly housebound means I have been
reading more and I've finished knitting the cardigan I started three
months ago.  In spite of the ups and downs, life is good!

Poor genes, poor health – but not poor me!

I’m approaching the 2nd anniversary of my diagnosis with ITP. I feel stronger and happier than I did this time last year, but it’s been a strange journey, and along the way there have been far more questions than answers!

Every three weeks I have a blood test, and my GP and I analyse the data and come up with a new or extended hypothesis of the underlying causes of my low platelet count and my prognosis over the next few weeks. As well as the all-important platelet count, we have a cycle of other markers we monitor – cortisol, haemoglobin, red cells, white cells, lymphocytes, monocytes, basophils, eosinophils, calcium, vitamin D and vitamin B12, plus a string of blood chemicals and hormones identified only by initials – most of which I only have the very vaguest understanding of what they do.

No simple answer for thrombocytopenia

Two years on and the one thing that is clear is that there is no simple, straightforward answer as to why I have thrombocytopenia. Why my platelets bounce up and down, and struggle to reach 100. Why 50 or 60 is an OK level for me, though it would be a tremendous psychological boost if they would sit on 100 for while.

On 50, or better still, 60, I function pretty well most days, with maybe one dodgy day a week or 10 days. By ‘dodgy’ I mean slow moving in the morning, or shaky for the first couple of hours, so my bad days are nowhere near as horrible and debilitating as they have been, and are, currently, less frequent.

Over the months, we’ve looked at various possible causes or contributing factors, such as H pylori ,gut parasites, and low-grade Lyme disease. Plus we have identified some of my genetic deficiencies – being gluten-intolerant and also unable to metabolise folate from food. Now we have another one – low level hypothyroidism.

Hypothyroidism a possible villain?

In the latest blood test, we checked my Vitamin B12 level, something we do every three months, together with homocysteine. As usual, the B12 was lowish – still within the very broad range of 145-637, but this time right at the bottom. And the homocysteine was way up, almost double what it should be. Both the high homocysteine levels and the inability to metabolise folate are linked to the MFTHR gene and can occur together with low levels of thyroid hormones, and could indicate very borderline hypothyroidism.

That my presumed hypothyroidism is very marginal is shown by the fact that I exhibit none of its most noticeable symptoms: tendency to gain weight and inability to lose it; slow thinking; thin hair and hair loss; puffy eyes; oily skin; and other more delicate comparisons – such as constipation vs irritable bowel.

What it appears I have is ‘secondary hypothyroidism’, thanks to the last year’s adrenal fatigue and my ongoing adrenal insufficiency. So possibly the borderline hypothyroidism is not so much a cause as what the medicos call a co-morbidity – connected, but not necessarily cause and effect.

Chronic condition from long-term problems

To sum it up, here’s my equation:
a lifetime of less than optimal health (as a result of choosing my parents badly), compounded by environmental factors* + an unknown viral or environmental stress in 2009 = ITP.

Not a clear cause and effect, or diagnosis and cure, but good enough to be going on with, now that what was life-threatening two years ago is pretty much under control.

Reasons to be cheerful

• My weight is pretty steady at an appropriate weight for height and build: 60kg to my 160cms and thin bones;
• I have good energy (most days)
• I enjoy going to the gym 2 or 3 times a week
• I have enough freelance work that I can manage
• I love doing coffee or going to a play, concert, discussion group or art gallery with family and friends
• I have time to write my short stories
• The jacarandas are flowering
• I feel good!

* Tasmania, my home state, has very low iodine levels in the soil, causing many people to develop gross hypothyroidism and goitres. This connection was not recognised until I was about 10, so I would not have had an optimal iodine intake during my early growing years.

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.

A Respite Phase?

For the past 6 weeks or so I have been feeling pretty good, despite being “a magnet for colds and flu”, according to my GP, because some of my immune system markers, the immunoglobulin subclasses Ig1 and Ig2 are still very low. Ig3 and Ig4 are somewhat low, but within the range, so they’re not a worry.

My cortisol levels are still alarmingly low at almost a quarter of the expected baseline level. The adrenal glands and pituitary gland are still not functioning properly. So you would expect me to be feeling slow in the mornings, and with the low immune system, liable to catch whatever is going around in the way of germs.

Not so! I’ve been remarkably well. So well that when I visited friends and family in Melbourne and Tasmania, I sensed a little disappointment that I didn’t look like I was at death’s door, as some had expected. I assured them that I HAD been at death’s door, especially when I’d had to rush to the emergency room during February’s heatwave, when a combination of heat exhaustion and crashing nausea from migraines made me very sick indeed.

But I’ve been delighted to be feeling so bright and energetic, as it meant I could finally take my brief interstate holiday, and enjoy catching up with my son and daughter-outlaw and my three gorgeous grand-daughters, other relatives and many friends, as well as the perfect autumn weather. I always feel much better when the sun is shining! I came back exhausted from so much pleasurable activity, and was surprised to find my platelets had doubled from 45 to 93, quite high for me. On the strength of that bounce, and my continuing good health, we reduced my steroids by .5mg to 3.5mg daily.

Cordyceps works – at least for me

I’ve been taking the Chinese fungal preparation, cordyceps sinensis at the rate of two 500mg tablets each morning, for the past four months. It’s been clear for at least two months that this is assisting me to maintain good energy levels despite my poorly functioning adrenals and pituitary gland, and it may also be improving my immune function.

Whether I will need to continue taking cordyceps after I’m finally weaned off the prednisone is not yet clear, but I’m happy to keep taking it, as I’ve had no adverse reactions to it, and some definitely positive effects. Without it, I think I would be far less chirpy than I am!

Weaning the prednisone – what’s ahead?

Not surprisingly, I’ve been really enjoying this sense of well-being, and of feeling that I’m almost ‘back to normal’. But what is ‘normal’ for me in this new situation of learning to live with chronic illness? Both my GP and my psychologist have warned me I will likely have setbacks – that I won’t always feel as good as I do now.

The psych gave me some very good advice, which I’m applying by writing this blog. He suggested I write a note to myself – from my well self to my unwell self. It’s to be read when I hit a setback, reminding myself that I’ve been ill before – several times during this past 18 months – and that I’ve got better, and even bounced back. That no phase is permanent – nothing in life is permanent, but just as there will be bad times with my health, so there will be good times again. The whole series of posts in this irregular blog will show me that!

Even now, in dropping the pred down to 3.5mg, I’ve had a little bit of an adverse reaction. Not immediately, but after a couple of days. I started to feel a touch shaky in the mornings, slower to get started, and at night, brief palpitations on going to bed. For two days in a row I had very little energy, and spent the afternoon of one day, and the whole of the next reading and knitting. Thank goodness for beautiful autumn sunshine – I was able to ‘convalesce’ in a comfy chair on my balcony soaking up the rays, surrounded by my plants.

On the bright side

The autumn sunshine finally induced my nasturtiums to bloom, so there were bright yellow and orange flowers to greet me when I came back from my holiday. All the herbs on my balcony are doing well – I can pick rocket, chives and parsley every day for a bit of fresh green life, the oregano and everlasting basil ares still going strong and the rosemary bush has started to show tiny mauve flowers. What a joy even a tiny garden can be!

No wonder I’m exhausted!

It’s been over 6 weeks since I last documented my struggle with ITP, or, more optimistically, my experience of life with this autoimmune condition. A lot has been going on over this time, most of it seemingly in slow motion, despite its obvious urgency, because of my lethargy and general sense of exhaustion.

The major event that I’ve struggled through – with the physical support of a few good friends, and the moral and financial support of my family – has been the move from my two bedroom inner-city apartment to a much smaller one-bedroom place in a nearby residential suburb. I’ve exchanged the constant roar of traffic, beeping car alarms and sirens with the sounds of lawn mowers, leaf blowers and planes taking off and landing (under the flightpath of Australia’s busiest airport), as well as raucous calls from wattle birds in the street’s flowering bottlebrush trees.

Thank goodness for all the help from my friends with this move, as I was almost incapable of any action, thanks to the constant, daylong headaches, shakiness, palpitations and just sheer exhaustion. I’m very grateful to them all!

At my last doctor’s appointment before my move, she referred me for a CT scan to check for any physical damage to my pituitary gland. We already knew from blood tests that it wasn’t producing enough of the hormones ADH (which controls kidney function), ACTH (makes the adrenal glands release cortisol) and TSH (thyroid stimulating hormone). So the adrenal and thyroid glands weren’t getting the message to produce their own hormones, and I was getting no energy.

Early this week I had the CT scan, and to everyone’s relief, my pituitary gland, and all the rest of my brain, is physically fine. No visible damage anywhere – no tumours or lesions, nothing. Phew! So, all the lethargy, etc, etc, are yet another score against the prednisone. To be fair, that medication has kept my platelets at 50 for the past three weeks, despite all the stress.

Adrenal Exhaustion

What I do have are the classic symptoms of adrenal exhaustion or adrenal fatigue. (Other names include non-Addison's hypoadrenia, sub-clinical hypoadrenia and hypoadrenalism).

Symptoms of adrenal exhaustion include:
• excessive fatigue and exhaustion
• non-refreshing sleep
• sleep disturbances
• frequent urination, especially at night
• overwhelmed by or unable to cope with stressors
• craving salty and sweet foods
• feeling most energetic in the evening
• low stamina, slow to recover from exercise
• slow to recover from injury, illness or stress
• difficulty concentrating, brain fog
• poor digestion
• low immune function
• excessive sensitivity to cold
• food or environmental allergies

We already knew I had food allergies, thanks to the single gene for coeliac disease I possess. Low immune function is not surprising, since the prednisone is deliberately damping my immune system to prevent it destroying the platelets. However, it’s not much fun that it’s apparently suppressing the pituitary and/or the adrenals and thyroid.

Treating Adrenal Fatigue

Since the adrenal fatigue is complicating matters, slowing down the gradual reduction of the steroid dose my doctor and I have been aiming for, as well as generally making life pretty miserable, we are working to reverse it. First up, my Chinese herb formula has been reworked to include larger doses of adrenal stimulating herbs.

Meanwhile, as we wait for the herbs to kick things along, my doctor is continuing her research into hydrocortisone as a replacement for prednisone. Basically a natural steroid, hydrocortisone has a slightly different action from the corticosteroids, but it can also cause some problems in the changeover period, so we are proceeding cautiously.

Heavy Metals, Pesticides, Plastics Residues, Mould?

Other possible causes or contributing factors for my general lack of oomph could be heavy metal contamination - such as mercury from amalgam fillings in teeth, or eating too much fish and seafood; pesticides; plastics residues (from plastic water bottles, takeaway food containers) or mould toxins.

There is a method of ‘detoxing’ the body to remove these contaminants that is widely used in the veterinary and agriculture industries, and has long been recognised by Traditional Chinese Medicine. It’s a series of naturally-occurring minerals, zeolites, colourfully described as “nature’s sieves”.

The honeycomb-like structure of negatively-charged zeolite particles enables them to attract and electro-chemically bond with toxic minerals and metals such as lead, copper, aluminium, cadmium, nickel and arsenic, which can then be excreted safely from the body. However, like all detox treatments, taking zeolite drops can be a strong therapy that an already exhausted system might find overwhelming, so that’s another path we’ll be treading cautiously.

Other medical applications of zeolites include stimulating the immune system, treating osteoporosis, and the healing of wounds and surgical incisions.

On the Bright Side

The best thing about the past few weeks (apart from all the support I’ve received), is that my new balcony faces north. All-day sun in the middle of winter! (On the sunny days, of which we’ve had several). I can sit out with a drink and a book, watch the birds in the trees or just lie back in my canvas chair and soak up the rays! Nothing like sunshine for lifting the mood!

Reality Check

One month on and my platelets have been up and down, and my emotional and physical health with them. I had a high – a record 101 three weeks ago, with ensuing confidence, happiness and denial of how serious the condition is. Thank goodness I have my psych to bring me back to some sort of reality once a fortnight!

Because of, course, as soon as we reduced the prednisone by the tiny 0.5mg, the platelets took a dive, and kept on diving for 3 weeks in a row. Down went my strength and resilience, up went the incidence of headaches and shakiness

The platelets have stopped diving, and crept up a whole two points, but at least my doctor and I are starting to recognise my immune system’s pattern. It takes three weeks or so for my cortisol levels to get up to the artificial level of the steroids, so there’s a gap when it’s below what it should be. So the platelets start dropping and keep dropping. Then, it catches up, & they turn around, & rise for 3 weeks until we do the next reduction.

H Pylori and Gut Parasites

During this month I’ve had a series of extra tests, as we cover all the angles. Following last month’s research findings on H pylori, we checked my blood for antibodies. Thankfully we found none, as I really didn’t want to add antibiotics to my pharmaceutical diet. Next, we’ve tested my faeces for signs of gut parasites that might be causing the regular bouts of diarrhoea that afflict me, and reduce my absorption of nutrients from my food. The results aren’t all back, but it seems probable that I’m clear. Which points the finger at food intolerances.

Testing for Food Intolerances

I’m already aware that I’m gluten intolerant, thanks to the presence of one gene for coeliac disease. So, I’ve - reluctantly - adopted a strict gluten-free diet, and started making my own bread – so much better flavoured (and cheaper) than the commercial stuff. Even more reluctantly, I gave up my morning serve of porridge, as even I had to admit that I could no longer digest oats. The 1/8th Scottish blood in me was sorely tried by giving up porridge, and replacing it with the less tasty and certainly less filling millet ‘porridge’.

Now, it seems my Scottish and Welsh heritage (also only 1/8th) might be to blame for some other form of food intolerance. It turns out that people of Celtic background are more prone to food problems than non-Celts. The poor Irish have the highest incidence of food intolerances in the world. So now we’re checking to see if I have the somewhat rude-sounding MTHRFR gene, and if I do, it will be off to see the food intolerance expert at Sydney Uni.

More Depressing Results Of Long-Term Steroid Use

Also during this month of tests, I had a bone mineral density check up, and yes, my bones are thinner by 5%, pushing me ever closer to osteoporosis. It seems the prednisone is drawing calcium from my bones into my blood stream, and, according to my doctor, taking a calcium supplement would simply put more calcium in blood, not back into my bones, until we can majorly reduce, or even stop, the steroids for a while.

Equally bad is the news that I now have metabolic syndrome(‘pre-diabetes’). While I knew the steroids had raised my triglycerides and total cholesterol to quite high levels, my blood pressure is well controlled, and remains perfectly normal, so I’d hoped I would escape the treat of diabetes. Well, no, I’ve developed insulin resistance. So, another change of diet, to minimise it. Now I must drop my carbohydrate load and eat even more protein – ie– at all three meals a day, and up my fat consumption to replace the energy I won't be getting from carbs. Eight months ago I was on a low fat, low protein (100 grams a meal), high carbohydrate diet that suited my lifestyle and kept me around my normal weight of 65 kilograms. Now it’s completely reversed! Thanks, steroids – thanks a bunch!!

Also this month I had a date with my optometrist, who confirmed my eyesight was worse than this time last year – by a large amount, but reassured me that it might not be permanent.

On the Bright Side

It’s winter in Sydney, which means it’s not cold by most people’s definition, the sun shines most days, and I’m enjoying rediscovering meat dishes and relearning how to cook tasty warming meals the slow cook way. And my doctor says I should eat more bacon – in moderation, of course!

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.

A Life Lesson Finds Me Grumpy

This week I’ve been faced with learning another of life’s lessons, and for all I ‘m trying to be positive, it’s left me grumpy and feeling sorry for myself.

A few days ago, I went to my local hairdresser to get my hair cut and to chat with the pretty girl who does it about options for colour, as the reddish purple I‘ve been using lately fades too fast in Australia’s strong sunshine. It also doesn’t suit my red, swollen pumpkin face.

This girl, Anna, has long blonde hair, and looks like an archetypal Disney cartoon heroine.

When I first met her, four months ago, she was lively and animated. This day, she looked tired. Knowing that she had, some time in the recent past, also been on steroids, I was complaining about how I hated them - how fat I am, how I barely have anything that fits me, how I hate my puffed up face and the lack of sleep, and the loss of energy, etc, etc.

Then she told me she was living with something like chronic fatigue, and that she frequently has days when an hour after getting up, she needs to lie down again, because she's exhausted. She had been working full-time at the hairdresser's, but has had to cut her hours back, as she's not strong enough, and has been advised to try to rest.

"I’m only 25, I don't want to be resting!", she said. Poor kid! I felt so selfish & egotistical! I vowed to stop complaining right there and then.

One Good Day, Two Bad Ones

But it’s not that simple, and I figure I can complain here, even if I keep my mouth shut in public. I know I’m not as sick as Anna, but there are far too many days when these blasted steroids make me feel as if I am! If I have one good day, in which I feel almost normal (as long as I don’t catch sight of my face in the mirror), it’s almost inevitable that the next, and often the one after that, will be spent lying on the couch, barely able to move or think.

For example, yesterday morning I went for a gentle walk before breakfast. I went to the big local park, usually an easy 10 minute walk for me. I didn’t push myself, but enjoyed stretching my legs and breathing the fresh air, and got to the duck pond in 20 minutes.

Then I sat for about 20 minutes, watching the birds, looking at reflections in the water, loving the trees around me, enjoying the sight of people walking their dogs. I walked slowly home, sitting at a bus stop halfway along for another rest break. I was home about an hour after I’d left and I was feeling good!

After breakfast, I took my steroid dose, and promptly lost one and a half hours to the shakes, palpitations and energy drop. I lay on the couch, wrapped in a sweater, and dozed.

About mid-morning, I felt it lift a bit, and went into my office to attempt some freelance writing. I managed about two hours, slowly, of writing and reading research, but by lunchtime knew I had to give up. The afternoon was spent on the couch - and there was no cricket to watch, the only daytime tv I like! My eyes were so blurry I couldn’t read, but I managed a little knitting, in between shivering and dozing.

Today is a little better. My brain is working at half-speed, so I can just manage this blog, but my energy is barely above couch level. And my positive attitude is having difficulty maintaining altitude.

I know I will get better. I know I will be off the steroids in another six weeks or so. If I’m lucky, the ITP will truly be idiopathic and never return, though it’s far more likely it will recur on occasion, necessitating some use of the steroids in the future.

Sadly, I also know from what Anna told me, that it can take at least two years after stopping before the steroid effects wear off completely and I resume my normal face and body. If ever!

Always Look on the Bright Side of Life

Ever since 'The Life of Brian', I’ve tried to live by that motto, as I’ve faced many of the life crises other women my generation experience – marriage breakdown, retrenchment, severely reduced income, some truly nasty things in my past needing to be acknowledged and dealt with.

Why should this health problem be any different? So, I’m going to sing along with Brian!

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.