Monday, January 25, 2010

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!

Friday, January 15, 2010

So Long and Thanks for All the Fish

Today I farewelled my haematologist – he’s off overseas for several weeks – but I also farewelled him from managing my condition. First up, I have another beautiful number – 202,000, so I am well and truly back in the land of people with a full complement of thrombocytes in their blood.

Secondly, I’ve finally met the doctor who respects my experience of the way my body works and responds to different chemical stimuli, and who is going to work WITH me, to help me manage my condition in the way that is best for me.

This is the wonderful Dr N D, the GP I’ve waited so long to meet, who treats people with ITP with Traditional Chinese Medicine (TCM) as well as up to the minute western medicine.

The Patient Knows Their Own Body Best

Dr ND hasn’t given me Chinese herbs, as they wouldn't work now I no longer have ITP symptoms of severe bruising and risk of internal bleeding. Instead, she’s helping to wean me off the steroids, much more gently than the haematologist. Apparently my body is just not adjusting to the huge drops on the dose every two weeks - 10 mg at a time - and it takes most of the fortnight to settle to that level, then we do the big drop again. That's why I have such a severe response most days - so severe that some days all I can do is lie on the couch. My poor body is pharmaceutically over-stressed!

So now I’m cutting back much more gradually, by 1mg a fortnight, a week or every few days, depending how I respond. The responsibility is mine to decide when to make the next cut, as “the patient knows their own body best”. I’m keeping a diary of what dose I take and what reaction I have to it, both positive and negative.

At the same time, we’ve split the dose in half, to be taken twice a day instead of one big one. Just that move alone, four days ago, has greatly lessened the morning shakiness and palpitations, replaced now by an overwhelming sleepiness. I still lose up to an hour and a half each morning after my dose, but so much more enjoyably snoozing!

Today I’m down from 15mg to 13mg. I will stay on that for a couple more days, and aim to get down to 10mg in about a week.

The Complex Biochemical Equation of My Body

“What a piece of work is man,” Shakespeare remarked. Had he been a woman over 55, he might have added: ”and what an even greater piece of work is a post-menopausal woman!”

Dr ND took a number of blood samples for tests, not just for a platelet count. She says the thrombocyte count is just one factor, and it's a blunt instrument, so she's looking at what my adrenal gland is doing, what my blood sugar and insulin levels are, my kidney function and levels of chemicals like magnesium, calcium and sodium. We will repeat all these tests once a fortnight, or more frequently if necessary.

Twenty-four hours later she rang me with results. On the plus side, my thrombocyte count was over 150,000 and my blood sugar levels and insulin were normal (so no risk of Type2 diabetes). Cortisol, (the hormone produced by the adrenal gland, which can stop being produced when taking oral steroids) was also OK.

On the minus side, my kidney function was not looking good, my calcium levels were too high, and my blood sodium levels were way, way low. The good doctor said such low levels make the brain fuzzy, sluggish and confused, which would have amplified the nasty response to the steroids. In the worst cases, especially in frail elderly people, seizures may occur, possible coma and even death.

Why was my blood sodium so low? I asked. Well, the medication I’ve been taking for the past 18 months to manage my hypertension, Karvea (irbesartan), leaches sodium from the blood, and in fact, there is a warning about it being contraindicated in cases of sodium depletion.

Like many people on antihypertensive medication, or just being cautious about high blood pressure and possible heart disease, I've cut back severely on salt and salty foods for several years, and even feel a little guilty when enjoying salty treats like olives and hot Hungarian salami. And probably that was a wise precaution before I was prescribed irbesartan.

Goodbye Haematologist, Hello Real Personal Responsibility

When I saw my specialist this morning, I very tactfully discussed these changes with him. He was delightfully patronising, (if you like being patronised by what my more outspokenly feminist friends call a “male chauvinist pig”.) He knows my GP to be painstaking and competent, and after all, “managing steroids is not rocket science”.

When I said that splitting the dose had made such a difference to the intensity of my morning reaction, and that the magnesium supplement had calmed my painful leg cramps – both things I’d complained to him about in previous consultations – his response again was the “rocket science” comment. Yet not once had he suggested any means to me to alleviate what he’d always dismissed as “common side effects”.

So I thanked him very prettily, and he congratulated me on my new number – 202,00 – which he assured me meant that my ITP episode was over (!), and we parted with relief on both sides.

Taking Responsibility isn’t Easy, but it’s the Only Way

I have been so lucky, firstly with a good healthcare system that I can get medical and hospital care paid for out of my taxes, and secondly to find good primary care practitioners (GPs), like the one I’ve had for a few years, and my new ‘angel’, Dr ND.

Nevertheless, it's been up to me to research my condition and try to understand every aspect of it, and then to argue with the relevant doctor until I can take full responsibility for my actions and my health (as far as it’s amenable to my will).

And that, I think is the case for all of us, whatever the health condition we have to deal with. It’s your body – own it!

Friday, January 8, 2010

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!

Monday, January 4, 2010

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!