It's good news week

 Well, this week is good news week, and the lucky number is 96!  That's a long way up from last week's dismal and scary 20, or the 36 the week before, and eight times better than that terrifying 12 I had a month ago!  So last week's steroid pulse worked.

Never mind that the right side of my face is tight and shiny, puffed up into the beginnings of the dreaded 'pumpkin face' I had for several months back in 2010. Or that my sleep  at night has been badly disrupted, waking to pee, and not getting back to  sleep for an hour or two, or on one really bad night for two and half hours. Plus all the other high steroid side-effects I've already described.  No wonder I've been grumpy lately!

Finding some good in necessity

There has been one unexpected benefit from the pulse and that's been the steroid 'hyper'. While it's a pain at night to have your brain going so fast you think it will take the top off your skull, in the daytime that much energy and ability to think fast is exhilarating. I've completed a huge lot of work over the past two weeks thanks to this amazing source of energy and surprisingly clear thinking. Not creative work, but nit-picking proofreading for commercial clients, which helps to pay for all my expensive supplements and high quality meat and fish protein. That's very satisfying, since I've been stuck at home for so much of the past few weeks and the hyper mood does not allow for quiet reading and listening to music! 

Sudden energy slumps

The downside is the  way that energy suddenly drops, like it fell out of your body down a chasm.  Whump! It's gone, and I'm left drained and brain dead for several hours.  Until the brain starts up again about 10 pm...

A holiday from the pulse

Since my number was so unexpectedly beautiful, my doctor and I agreed on a week's holiday from the pulse.  We'll see if my face goes down, the other side-effects subside to bearable, and more importantly we'll see if next week's blood test shows the platelets up, at the same level, or down.  My doctor thinks we've turned this low patch around.  I'll believe that when we get a run of good results.

On the bright side

 It's so good to be able to sleep again at night!  To wake and go for a pee, come back to bed and zonk straight into dreamland is wonderful!

Walking through the university early in the morning for my weekly bloodtest is always a pleasure, no matter how shaky I feel when I start out. Here's a secluded corner of the uni grounds:

Feedback from fellow ITP sufferers

Last week I had an email from John, who was diagnosed a year ago. It was lovely to have an email conversation with him, especially as he told me he found this blog helpful.  He described the major changes to his life in the 12 months since his diagnosis - " new routines, new worries, learning to adapt to changes in my life" and the fluctuating low platelet numbers. I'm sure I'm not the only person with ITP who can relate to John's experiences! I would love to hear from others about their experience with ITP.  You can email me or simply comment on this blog.

John was hoping that having a weeekly injection of a medicine called N-Plate would bump up his platelet production. He and his doctors are hoping he can get to 75. 

Romiplostim

N-Plate's pharmaceutical name is Romiplostim. It stimulates the bone marrow to create large numbers of platelets at a time to overcome the immune system's ability to destroy them.  It is not intended to create a full platelet count but to get the platelets over 50.

In the US, the FDA approved Romplostim as a long-term treatment for adults with ITP  who have not responded to other treatments such as steroids,  intravenous immunoglobulin, Rho(D) immune globulin or a splenectomy. In Australia, it is considered very much a last resort treatment, after everything else has failed.

Good luck with your N-Plate, John. Do let us know if you get to 75 and stay there.

Another setback

Last week's blood test result - 46. This week's blood test result,
which I got yesterday was - not 60 or even 50, as I'd modestly
hoped, but - 12. 46 was certainly not as great as I'd hoped, but it
was pretty OK, and definitely out of the danger zone. 12 is back in
scary territory!

In other words, although the steroid pulse my doctor and I did 10
days ago had definitely worked - a jump of 34 - it hadn't held once
I was on 5mg for a week. I'd lost everything I'd gained, while
putting up with all the usual unpleasant side-effects of a relatively
high steroid dose. 

So we're trying the pulse again - this time over  a longer period.  I started on 25mg last night and will take that for three nights, then on to 15 mg until I see my doctor again after next week's blood test. If the results are encouraging, we'll drop down to 10 mg for some days. It will beabout three weeks before we get back to 5mg, and  only if my platelets are much higher than 46.

As well as being under 'house arrest' again for at least until next
week's blood test, I can look forward to three weeks of increasing
discomfort from the horrible steroid side-effects.

Steroid side-effects

If you've never been on high steroid doses this is what I and many
others experience: sudden drops in energy, shakiness, palpitations,
indigestion and belching, pain in the oesophagus that feels like a
knife stuck through me, disrupted sleep - waking up and being
unable to get back to sleep because your mind is spinning with
thoughts. Not exactly fun!

Brain fog

Both my doctor and I hope I won't be on the higher doses for so
long that they affect my adrenals and produce the dreaded brain
fog.

Brain fog is similar to what many people receiving chemo for cancer develop.  Your brain feels full of cottonwool or thick fog; your neural synapses seem sluggish or unwilling to fire. It is debilitating and depressing to be unable to think clearly; often it affects your ability to make sense of what you're reading.

Damage to the adrenals also leads to fatigue. So it's no wonder I'm
feeling a wee bit down this week!

At the moment, my adrenals are coping and thank goodness my
brain is only a tiny bit slower, so I can still work effectively.

Always look on the bright side of life

I've been through all this before, but thankfully not for quite a
while. And each time, I've bounced back and my brain has returned
to action. So far this year I've been remarkably well, and for much
of last year, apart from debilitating migraines in summer. In fact,
the problem seems to be that I'm just too healthy! Even spending
three weeks in Boston in the spring sunshine and coming back to
winter in May didn't cause any health problems, if I ignore my
immune system munching up my platelets faster than my bone
marrow can make them.

And although my doctor telling me the bad news threw me a few
minutes of teary anger, I walked out of her surgery laughing. I said
I was heading to the nearest café for a restorative coffee and how
glad I was that coffee protects the liver against  steroid by-products. Shetold me about a patient going for a coffee enema to  detox,
who was surprised she was buzzing for 48 hours after. Yikes!! I'll
take my coffee orally, thanks!

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.

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!

On the See-Saw Again

Two weeks on and two more blood tests and my platelets are “behaving like the stock exchange” as my doctor put it. Up and down like a yo-yo.

Last time I posted, a fortnight ago, they had crept up to 34 from a scary low of 22. The following week they bounced to a magnificent 55, lifting my spirits almost as high.

Alas, this week’s blood test shows them back down at 35. However, thanks to my doctor’s meticulous tweaking of the Chinese herbs each week in response to my blood chemistry results, everything else in my system is behaving well, with all indicators sitting where they should be.

My neutrophils (white cells) might be a touch high, and busily munching on my platelets. But I’m not panicking, and neither is my doctor. We’ll wait and see what next week’s blood chemistry shows.

Emotional Highs and Lows

Despite that lovely number of 55, this fortnight has been a real emotional see-saw, with lows outnumbering highs two or three to one, and frequent mood swings every day. At times it has seemed like every hour. As soon as I pick myself up, some loss of control over my life – usually resulting from dealing with a health or welfare bureaucrat or real estate agent – sends me tumbling down again.

Some of this depression is directly from the steroids (depression is a known side-effect from long term corticosteroid use), but a lot is from the uncertainty of my financial situation and the frustrations of trying to find somewhere cheaper to live to match my reduced income.

The past two weeks have been laden with delays, frustrations and intense anxieties, and I have to say ‘emotional lability’ (a tendency to burst into tears with little warning) is quite exhausting. And in itself, quite frustrating!

This Week’s Bright Side

The big plus this week is that my energy and brain power are FINALLY coming back, thanks to the wonderful herbs which I’ve been taking religiously, twice a day, and the restricted diet, which I’ve been sticking to. I feel almost normal again and managed to do the 25 minute walk to my doctor’s surgery (it’s gently downhill), tho’ I had to catch a bus home again.

Another plus is that, with the help of my adult children, I’ve found a cheaper place to live in the same neighbourhood, and my friends and family will help me make the move in a couple of weeks.

And my lovely doctor took pity on me over the expense and utter lack of flavour and texture in commercial gluten-free bread and has allowed me to have a small bowl of porridge for breakfast again!

It’s a glorious Indian Summer Autumn here in Sydney. I can walk through my favourite park or just sit there in the sun, and for the first time in a long time, I’m feeling OK!

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!

Ups and Downs on the Steroid Rollercoaster

Today I had my second session with my new ‘wonder worker’ GP. I reported how I’m dropping the steroid dose (1 mg every 2 days) and how much better I've been feeling. In particular, that my brain is a lot clearer, and my energy levels higher, though neither of them as good as they were before November 11 (ITP day).

While she was delighted with my progress, the good dr brought me back down to earth, warning me that the last few milligrams - in particular the last milligram - of prednisone is the hardest to wean the body off, and it might take some days of taking halves or even quarters of that last 1 mg tablet.

As she pointed out, when I did the steep drop from 20 mg to 15mg, I was reducing the dose by 25%. Last week I went from 13 mg to 12 mg (7%), and this week from 8mg to 7mg (12.5%). Next week I’ll be going down to 4mg, with the drop from 5 to 4 being a whole 20%.

But when it comes down from 2 mg to 1mg, that’s a BIG drop of 50%. She warned me I might have some really nasty experiences dealing with such a proportionately steep drop - even the possibility of depression again – as well as palpitations etc.

But hey, that’s two weeks, and two blood tests away!

Oh, What a Tangled Web…

No, I haven’t been deceitful – I’m referring to the immensely complex and convoluted physiological web that is the human body, especially when you add in various pharmaceuticals.

One of the unexpected side-effects of all this intervention has been the sudden oedema (swelling) of my legs. In particular the left leg, which swells up gradually during the day & never fully subsides during sleep. It becomes very tight and shiny and quite hot, & I cannot put the fat foot in any shoes other than my loose plastic clogs, or my very old gym shoes, just barely laced together.

This is partly a response to my too enthusiastic adoption of salt tablets to correct my sodium imbalance (even though I’m taking less than the minimum three the label suggest), combined with my own (unadvised) halving of my daily dose of Karvea, to reduce the enormous volume of pee each night. Wrong, wrong, wrong!! Apparently I need to keep peeing vast cataracts every night, to drain out all the fluid I’m storing in my face and now my legs.

Joint Pains, but Not from the Steroids

As part of this week’s general discomfort, along with the return of nightly leg cramps (though not as severe as before), I’ve also been experiencing pain in all my arthritic joints. And in my neck, shoulders and ribs. For these, I can blame the steroids, but only indirectly.

The problem is I’m cattywampus, and my joints are all complaining. ‘Cattywumpus’ is a lovely word I’ve learned from my daughter’s American friends. It means askew, off beam, ain't quite right, what I’d call ‘skew whiff’.

Normally I’d be having a massage about every 6 weeks, and seeing my osteopath every 3 or 4 months for an adjustment, as well as doing all my appropriate exercises. But a lack of income, combined with one of the few positives of steroid treatment – masking of joint pain – meant I’d ignored my skeletal needs. Now the steroid dose has dropped low enough for my complaining joints to get my attention.

Did Someone Mention Vitamin D?

When my other GP told me some weeks ago that I was low in Vitamin D, I did the right thing. I gave away my sunscreen to a friend whose pale skin burns at the mere thought of sunshine, and bought a calcium supplement fortified with Vitamin D.

Of course, once I started on the magnesium supplement to counteract the leg cramps, I had to stop the calcium, as the two chemicals compete with one another for the same sites on the cell membranes, so it’s best not to take them at the same time. Being concerned about my thin bones, I questioned Dr ND today about calcium and Vitamin D and how I was to protect myself from osteoporosis.

There followed a convoluted biochemical lecture on the types of Vitamin D in the body – stored and activated – which I confess I didn’t follow completely, and will need to read the literature on, before I get my head around it, let alone explain it to anyone else.

As far as I can gather, I have too much of the activated type, and I don’t need to be trying to store any more of the other one (from supplements and/or sunshine). While the thin bones are a concern, it seem we have to put then to one side until we have completed the arduous task of weaning me off the prednisone, and getting the steroid residue out of my system.

Looking On The Bright Side

Yes, there are bright spots from today’s visit. I’m doing better than expected in dropping the dose down without too many problems. I do have more energy and brain power, even if my strength and endurance are still way below what I’d like.

And best of all, despite the swollen legs and feet, and still swollen face, my belly fat is going down!! Today I was able to squeeze into my wide-legged khaki-green linen pants – the same pants that last summer were too loose and needed a belt to stay up, and only a month ago would not go near me.

I may not be able to get my shoes on, but I can wear my favourite summer pants again. Yay!

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!

More Pains and Pills, but Progress, too

It’s unbelievable what a difference a good night’s sleep can make! Last night I had an almost normal five and half hours, in two goes – the first a blissful four hours long! I don’t remember being this sleep deprived since my children were little and I had a sick baby and an active toddler to cope with. At that time, I also had a loving husband who did the yucky bits like getting up and changing the pooey nappies, and heating bottles. But I still walked around during the day as if I was under water!

No pooey nappies now, 30-odd years later, thank goodness, but the latest set of steroid side-effects has wrecked my ability to sleep more than two hours at a time, if I’m lucky. For the latest - in what seems like a time bomb of steroid effects - is nightly attacks of extremely painful leg cramps. On a really bad night they wake me every hour, exactly 60 minutes later than the previous bout, and can only be calmed, or at least reduced to the point where I hope I can fall asleep, by walking around and rubbing in a muscle relaxing blend of essential oils called Be Relieved. This has always worked wonders on my ongoing musculo-skeletal problems, but I think only gives me psychological support in dealing with the vicious cramping in my calves and feet.

Somehow, last night, I managed to circumvent the cramps by dosing myself at bedtime with codeine-enhanced painkillers swallowed with warm milk and honey and a biscuit. Praise be – I had four hours zonked out, before a cramps-lite woke me at 3.30!

Cramps a Sign of Magnesium Deficiency

It turns out, muscle cramping and muscle weakness are signs of a magnesium deficiency, which we can lay indirectly at the feet of the prednisone treatment.

Prednisone inhibits the uptake of calcium, as we already know, and I’m taking extra daily calcium. But it also apparently depletes the body’s supplies of magnesium, and inhibits the uptake of more. Magnesium is involved in a complex dance with calcium to relay nerve messages and contract muscles. Hence the cramping. A deficiency of magnesium can also cause or exacerbate palpitations, which also bother me during the night.

So now I have a bottle of magnesium supplement, complete with extra Vitamin D3, vitamin B6 and Vitamin C, to add to the handful of pills I take with food morning and evening. But if it works – if it knocks off the cramping and the palpitations, and gives me a good night’s sleep again - I will truly be a happy camper!

Progress with Pills

The regional city I grew up in had as its municipal motto “Progress with Prudence”. As a schoolgirl, this always made me giggle, since “Prudence” was the glamorous blonde head girl of the private school I attended. However, I understand the City Fathers meant that they were forward looking but not irresponsible.

Well, as a matter of personal philosophy, I loathe being reliant on pills and pharmaceutical products for my health and wellbeing. But, I am being prudential, cautious – maybe even open-minded, and embracing the necessity of them right now.

Today I was able to cut my steroid dose back to 15mg for the next 12 days until I see my specialist again. Meanwhile, if the magnesium takes effect, and the reduced prednisone means lessened side-effects, I will keep taking the little white pills, the big white pills and the big pink pills. Another good night’s sleep like last night’s, and I’ll start to believe I’m human again!

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.

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.