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!

Going down!

Two more blood tests – now weekly - and it’s clear that as the steroid dose goes down, so alas, do my platelets. The pathologist is now marking my thrombocytopenia as ‘moderate’, with the latest reading at 53 (thousand). My haemoglobin count has gone down to 112 and ‘mild anaemia’, and my white cells are also disappearing too, though only just below the safety zone of 4.

So – it’s not a one-off idiopathic event, but as I feared all along, it’s ongoing and will need careful management.

At this stage, my doctor and I are experimenting – within clear clinical guidelines – to see how my body will respond to some Chinese herbs to boost my blood cells and support my spleen.
I now have a mix of 10 powdered herbs – zhi huang qi, bai shao-sheng, dang gui, dang shen, bai zhu-chao, shu di, chuan xiong, rou gui, fu ling and zhi gan cao – to take in hot water twice a day. They initially tasted pretty awful, but I’ve found by diluting them more than the instructions said, they not only taste bearable, but are less likely to give me diarrhoea!

I don’t know what the western or common names for these herbs are, but there is certainly liquorice in the mix! This makes the herbal ‘tea’ almost enjoyable once I worked out a dilution that meant I could mostly only taste the liquorice.

We have also stopped weaning me off the steroids, so I’m sitting on 1mg a day until I see the doctor in a week’s time, when we might have to bump it back up to 2 mg.

Let your food be your medicine

As well as the Chinese herbs, I’m on a strict diet to avoid stressing my body too much. I’ve been eating what I believed to be a healthy diet of green salads every lunchtime, occasional mid-morning or mid-afternoon snacks of raw celery and carrot sticks, as well as apples and cantaloupe pieces. I’ve never been all that fond of raw veggies, and apples are the main fruit I like, but I knew that salads and fresh fruit were healthy, so I persisted.

Well, seems I was wrong, again. At least for now. I’ve been told to only have well cooked vegetables and stewed fruit, as it’s draining energy from my body trying to digest the raw produce. That’s actually what I prefer, and how I used to consume my fruit and veg, until I decided to get really healthy!

The harder part of the diet to follow is the restriction on sugar. Sugar reduces the effectiveness of the immune system, by deactivating the white blood cells, specifically the neutrophils which attack bacteria such as Staphylococcus aureus and Escherichia coli. Since I have a lowered white cell count anyway, it would be foolish to diminish their fighting powers.

So no sugar in coffee, no cakes or biscuits, no honey or marmalade on my toast, and no sugar on my morning porridge. It would actually be a total prohibition, but stewed fruit would taste pretty awful without a tiny amount of sweetness (and I refuse to eat chemical artificial sweeteners)! Porridge tastes surprisingly pleasant without sugar and with just a tiny amount of salt.

Still tired, & now weepy

It’s depressing at times to find how easily I tire, and how little energy reserves I have. A walk to the park with a stroll around the duck pond, and then home again, can still knock me out for a couple of hours afterwards.

My brain feels like it has a hole in it, where the neurons have frayed apart, so I stop suddenly, mid-sentence, waiting for a neuron to bridge the gap and bring the word or thought back.

I have days when I’m shaky and a little weepy – some of which can be blamed on the steroid reduction, and some of it on the generally distressing situation.

On the plus side

On the bright side, my kidneys are almost back to normal – coffee tastes good again, yay!! My cholesterol count is rapidly dropping back to a safe level.

And, although I don’t know what I weigh this week, I can squeeze into more clothes and shoes, so I know the weight and swelling are going down somewhat. Still have the pumpkin face, but I have a sharp new haircut and a vivid purple hair.

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!

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!