ITP has a new name, or at least a more efficient attempt at nomenclature. New research on the condition was reported in the March edition of the American journal, Hematologist. The very first news was the name change, according to Professor of Pediatrics at New York Presbyterian Hospital, Weill Cornell Medical College, Dr James Bussel.
“There is now a standard nomenclature. ITP is now immune thrombocytopenia; the “i” is no longer “idiopathic” and “purpura” is no longer part of the name,” he reported.
Well, so now the medicos no longer confess in the condition’s name that they don’t know the cause. It is now officially an auto-immune disease and perhaps they have some better idea as the original cause of the condition.
New Hypotheses on the Pathology of ITP
Dr Bussel reported that understanding the underlying pathology of ITP has changed. The old idea was that thrombocytopenia resulted from antibody-mediated platelet destruction.
Now there are two new concepts. The most developed hypothesis is that the same antibodies that mediate platelet destruction also impair platelet production by damaging the megakaryocytes (the bone marrow cells responsible for the production of thrombocytes) and/or blocking their ability to release proto-platelets.
That's one idea. Here's another: “An exciting but to-be-explored area involves the role of platelet reactive cytotoxic CD8+ cells. These cells clearly exist, but their clinical relevance is not known,” Dr Bussel reported.
Another area of intensive investigation involves T-regulatory cells, which have been reported to be deficient in ITP in several studies, but as yet there are no results.
Eradicating H pylori Infection Lifts Platelet Numbers
Some researchers have suggested than an infection with Helicobacter pylori, the bacteria responsible for causing stomach ulcers, may have a limiting effect on the numbers of platelets in people already suffering from ITP.
An article in the journal Blood in February 2009, reported on a systematic review of all the studies published dealing with H pylori infection in patients with ITP. The researchers wanted to test “whether the eradication of H. pylori infection can increase the platelet count in patients with immune thrombocytopenic purpura”, which they said was “still a controversial issue”.
They looked at 25 studies including 1555 patients, and saw a 42.7 percent increase in patients’ platelet counts from around 30 to 100, and a 53 per cent increase in patients’ doubling of platelets from around 30 after treatment to eradicate H. pylori infection.
The researchers said responses were better in countries with a high background infection of H. pylori, but concluded that “the detection and eradication of H. pylori infection should be considered in the work-up of patients with seemingly typical ITP”.
I’ll certainly be discussing a test for H. pylori with my GP!
On the Way Up, I Think
For the past two or three weeks I’ve been feeling stronger and healthier, which is a great improvement. For three weeks in a row my platelet count sat at 46, so my doctor and I reduced my steroid dose by a whisker – 0.5 mg – to 7mg a day.
The following week the count dropped to 32. I thought this was a disaster, but my doctor was much calmer. All my other blood chemistry was good – haemoglobin back to normal, non-anaemic levels, kidney and liver functions good, and the cytotoxic leucocytes – the white blood cells eating up my platelets like Pac-Man in my bloodstream – were back down to a normal level. She tweaked my Chinese herbs some more and cautioned calm.
This week, the platelets have crept back to 36, and my physical energy and brain power are both at about 70 percent of what they used to be. I feel scarily normal, and will have to work hard at not working hard – that is, pacing myself to take lots of rests, do as much exercise as I can without tiring, and enjoy time with friends. Although I feel capable of working, I must be aware that I’m not 100 percent.
Meditation and Staying in the Now
In the past couple of weeks I’ve started seeing a psychologist to help me with depression – a normal side-effect of a chronic health condition, which is apparently exacerbated by the steroids. After a couple of sessions discussing the meaning of life (the old ‘why me?’ cry, when struck by crisis like diagnosis with a potentially life-threatening illness), we decided that what I needed was help with focus. Staying in the now.
So I have a cd with meditation exercises, and as well as going for a walk every day, I must now sit down quietly for at least 10 minutes and try to still my anxious, chattering mind. I know from reading about meditation that it can help lower blood pressure. I wonder if there’s any study done into the beneficial effects of meditation on platelet counts?
Friday, May 21, 2010
Saturday, April 17, 2010
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!
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!
Monday, April 5, 2010
A Hard Couple of Weeks
This past two weeks or so has been pretty miserable, with my platelet count a week ago down to the frightening figure of 22. My ITP doctor & I had agreed that if it went below 20, she would put me in hospital. So we upped the steroids to 7.5mg and she tweaked the Chinese herbs some more and ordered me to REST.
Just resting would have been lovely, but I also had to spend time visiting the State public housing authority to apply for subsidised housing, an appointment with a bureaucrat from the Federal government welfare agency to be assessed for the disability support pension, and a humiliating session with a church-based community welfare group to ask for short term accommodation or financial assistance. The elderly man interviewing me told me they didn’t provide housing, read me a lecture on being in an untenable position, & gave me a $50 plastic card for grocery money.
Being Pampered is Great!
For the last few days before the Easter break I had the joy of being pampered by my son, who came up from Melbourne specially to look after me. As it was school holidays, he had a few days he could spare while his partner & daughters visited her family, also interstate. J helped me buy groceries, cooked me healthy meals (I’m supposed to eat lots of meat), washed up, cleaned, made me cups of tea & pots of coffee, and sat and talked. It was wonderful! Three whole days of being pampered! He also helped me look at cheap private rental places online, although none were open for inspection while he was here.
Up and Down Again
J left the morning I had my latest blood test, and rang me the next day to hear the results. Thank goodness, the platelets had crept back up to 34. But my cortisol levels (from the adrenal gland) are horribly low – partly from ongoing stress and partly blocked by the steroids. This accounts for the dreadful slowness from early in the morning through almost to lunchtime, and the inability at times to think clearly, if at all!
My urate levels – by-products of breaking down the steroids – are very high, and the pathologist has warned they could be associated with alcoholism or metabolic syndrome. Since I’ve had no alcohol since Christmas, metabolic syndrome is the one to be a little concerned about. But not yet, as my marvellous doctor is on top of it all, and has tweaked my herbs yet again, both to support the adrenal gland and to help the body cope better with the steroid by-products.
Feeling Down
Not surprisingly, after my son left, and with the warning from my doctor that getting this condition out of the acute phase and into a more stable stage where the medications and herbs and diet keep the platelets at an acceptable level, could take another six months, I’ve been feeling pretty low - depressed and frustrated. I am supposedly eligible via one of the welfare levels (Federal, State, community) for some inexpensive counselling, but have not been told who’s paying and how I access it.
Adding to my depression is the attempt to find affordable private rental while I wait for public housing, a wait that could be up to a year or more. It’s hard to go house hunting when you have little energy and depend on friends to take you. Real estate agents aren’t particularly helpful towards renters, especially at the cheap end of the market, as they know there are far more would-be tenants than there are available properties. That said, my friends have all been marvellous, & it certainly helps to have another person when looking at a possible home.
On the Bright Side
On the day before Good Friday, I was notified that I’d been approved for the disability pension, and that payment would start in another two weeks. It was remarkably quick, as I’d been informed I wouldn’t know either way until May. This pension brings a little more money per week than the unemployment benefits I’ve been on, & there maybe other benefits, as yet unclear. At least I no longer keep having to prove to the welfare agency that I’m not fit to be working, so fewer forms to fill out & no more queuing up to lodge them in person.
The other bright point is that the strict gluten-free and sugar-free diet is working to reduce my weight. I’ve dropped another kilo down to 69. Only 5 more and I’ll be back to my normal weight!
Just resting would have been lovely, but I also had to spend time visiting the State public housing authority to apply for subsidised housing, an appointment with a bureaucrat from the Federal government welfare agency to be assessed for the disability support pension, and a humiliating session with a church-based community welfare group to ask for short term accommodation or financial assistance. The elderly man interviewing me told me they didn’t provide housing, read me a lecture on being in an untenable position, & gave me a $50 plastic card for grocery money.
Being Pampered is Great!
For the last few days before the Easter break I had the joy of being pampered by my son, who came up from Melbourne specially to look after me. As it was school holidays, he had a few days he could spare while his partner & daughters visited her family, also interstate. J helped me buy groceries, cooked me healthy meals (I’m supposed to eat lots of meat), washed up, cleaned, made me cups of tea & pots of coffee, and sat and talked. It was wonderful! Three whole days of being pampered! He also helped me look at cheap private rental places online, although none were open for inspection while he was here.
Up and Down Again
J left the morning I had my latest blood test, and rang me the next day to hear the results. Thank goodness, the platelets had crept back up to 34. But my cortisol levels (from the adrenal gland) are horribly low – partly from ongoing stress and partly blocked by the steroids. This accounts for the dreadful slowness from early in the morning through almost to lunchtime, and the inability at times to think clearly, if at all!
My urate levels – by-products of breaking down the steroids – are very high, and the pathologist has warned they could be associated with alcoholism or metabolic syndrome. Since I’ve had no alcohol since Christmas, metabolic syndrome is the one to be a little concerned about. But not yet, as my marvellous doctor is on top of it all, and has tweaked my herbs yet again, both to support the adrenal gland and to help the body cope better with the steroid by-products.
Feeling Down
Not surprisingly, after my son left, and with the warning from my doctor that getting this condition out of the acute phase and into a more stable stage where the medications and herbs and diet keep the platelets at an acceptable level, could take another six months, I’ve been feeling pretty low - depressed and frustrated. I am supposedly eligible via one of the welfare levels (Federal, State, community) for some inexpensive counselling, but have not been told who’s paying and how I access it.
Adding to my depression is the attempt to find affordable private rental while I wait for public housing, a wait that could be up to a year or more. It’s hard to go house hunting when you have little energy and depend on friends to take you. Real estate agents aren’t particularly helpful towards renters, especially at the cheap end of the market, as they know there are far more would-be tenants than there are available properties. That said, my friends have all been marvellous, & it certainly helps to have another person when looking at a possible home.
On the Bright Side
On the day before Good Friday, I was notified that I’d been approved for the disability pension, and that payment would start in another two weeks. It was remarkably quick, as I’d been informed I wouldn’t know either way until May. This pension brings a little more money per week than the unemployment benefits I’ve been on, & there maybe other benefits, as yet unclear. At least I no longer keep having to prove to the welfare agency that I’m not fit to be working, so fewer forms to fill out & no more queuing up to lodge them in person.
The other bright point is that the strict gluten-free and sugar-free diet is working to reduce my weight. I’ve dropped another kilo down to 69. Only 5 more and I’ll be back to my normal weight!
Sunday, March 14, 2010
Down and (hopefully) Up Again!
Last week’s blood test was a shocker – my platelet count was down to 33, with the pathologist flagging it as ‘marked thrombocytopenia’. Yikes!!
I feared they were falling from the previous reading of 50, as my gums had started bleeding when I clean my teeth, and I had one possibly unexplained bruise.
So my doctor had a little chat with me – and pushed the box of tissues over as my tears started to flow. This is serious stuff. Whether I like it or not (definitely not), I am seriously ill, and if those platelets don’t start climbing again, I could end up back in hospital.
So, despite my wishing it otherwise, we have increased the steroid dose to 5mg a day. I tried to bargain for 3mg, but was over-ridden. “Better to overshoot and be able to cut back later than to undershoot and have you back in hospital,” she said. I know when to give in gracefully.
Fortunately the Chinese herbs are having positive effects on other aspects of my blood chemistry. While my white blood cells (the neutrophils in particular) are still low, they are back over the danger line. My haemoglobin count has also improved, and is almost out of the anaemia trough.
Because this herbal mixture was giving me unwelcome bloating and some diarrhoea, it’s been tweaked to remove the offending herb. I’ve also found the mix is easier to take if it's made like a cup of tea – ie- diluted twice as much (not halving the dose but adding more hot water).
Food for Thought
My diet has been modified even further, mainly because of my muddle-headedness (or wishful thinking). When my doctor told me to cut out all raw fruit and vegetables and sugar, and eat only warm, cooked food, I thought she also said “and maintain a completely wheat-free diet.” Hence my discovery that eating porridge with salt is much more pleasant than having it laden with golden syrup or brown sugar.
But of course that’s not what she meant, and she said it more clearly this time. “Maintain a completely gluten-free diet.” Umm, that makes life more difficult, especially first thing in the morning. I have trained my body to need breakfast, the most important meal of the day. However, I am always dopey for the first hour or so of the morning, even without the steroid/exhaustion-induced random hedgehog munching my brain, but I can more or less make porridge in my sleep. Plus oatmeal is good for controlling high levels of LDL cholesterol.
Now breakfast will have to be (a) left-overs from the night before – (can I face them?); (b) home-made savoury muffins reheated in the microwave; or (c) toast made from disgustingly bland and crumbly gluten-free bread.
Still Tired and Weepy
It’s been a long hard week, and I have serious decisions to make about my future in terms of how I survive financially when I’m in no state to work more than a few hours a week. Not only does my body feel exhausted, but my brain too – what my doctor calls “brain fag”. This is a problem common to many people faced with a severe illness that becomes chronic, and financial stress can make it harder to relax and recover.
I am sick and tired of being sick and tired! How many chronically ill people must echo my cry?
I know that with my doctor’s help I will a reach a stage where my ITP is managed; when the factors destroying my platelets are balanced by factors that support them without damaging my immune system too much.
I know that when that point is reached I will have much better levels of energy and a more regularly functioning brain – instead of the short bursts of both I have at the moment. And then life will return to something more like normal. But that’s a way down the track, and I have to face the short-term challenges created by a much reduced income.
Always Look on the Bright Side…
This week’s bright side: the higher dose of steroids has blocked out the pain from my arthritic joints and tight neck after only two days. Marvellous!
Also marvellous are my friends, who have rallied round me with empathy and useful good advice (not all good advice is useful). Thank you. You know who you are.
I feared they were falling from the previous reading of 50, as my gums had started bleeding when I clean my teeth, and I had one possibly unexplained bruise.
So my doctor had a little chat with me – and pushed the box of tissues over as my tears started to flow. This is serious stuff. Whether I like it or not (definitely not), I am seriously ill, and if those platelets don’t start climbing again, I could end up back in hospital.
So, despite my wishing it otherwise, we have increased the steroid dose to 5mg a day. I tried to bargain for 3mg, but was over-ridden. “Better to overshoot and be able to cut back later than to undershoot and have you back in hospital,” she said. I know when to give in gracefully.
Fortunately the Chinese herbs are having positive effects on other aspects of my blood chemistry. While my white blood cells (the neutrophils in particular) are still low, they are back over the danger line. My haemoglobin count has also improved, and is almost out of the anaemia trough.
Because this herbal mixture was giving me unwelcome bloating and some diarrhoea, it’s been tweaked to remove the offending herb. I’ve also found the mix is easier to take if it's made like a cup of tea – ie- diluted twice as much (not halving the dose but adding more hot water).
Food for Thought
My diet has been modified even further, mainly because of my muddle-headedness (or wishful thinking). When my doctor told me to cut out all raw fruit and vegetables and sugar, and eat only warm, cooked food, I thought she also said “and maintain a completely wheat-free diet.” Hence my discovery that eating porridge with salt is much more pleasant than having it laden with golden syrup or brown sugar.
But of course that’s not what she meant, and she said it more clearly this time. “Maintain a completely gluten-free diet.” Umm, that makes life more difficult, especially first thing in the morning. I have trained my body to need breakfast, the most important meal of the day. However, I am always dopey for the first hour or so of the morning, even without the steroid/exhaustion-induced random hedgehog munching my brain, but I can more or less make porridge in my sleep. Plus oatmeal is good for controlling high levels of LDL cholesterol.
Now breakfast will have to be (a) left-overs from the night before – (can I face them?); (b) home-made savoury muffins reheated in the microwave; or (c) toast made from disgustingly bland and crumbly gluten-free bread.Still Tired and Weepy
It’s been a long hard week, and I have serious decisions to make about my future in terms of how I survive financially when I’m in no state to work more than a few hours a week. Not only does my body feel exhausted, but my brain too – what my doctor calls “brain fag”. This is a problem common to many people faced with a severe illness that becomes chronic, and financial stress can make it harder to relax and recover.
I am sick and tired of being sick and tired! How many chronically ill people must echo my cry?
I know that with my doctor’s help I will a reach a stage where my ITP is managed; when the factors destroying my platelets are balanced by factors that support them without damaging my immune system too much.
I know that when that point is reached I will have much better levels of energy and a more regularly functioning brain – instead of the short bursts of both I have at the moment. And then life will return to something more like normal. But that’s a way down the track, and I have to face the short-term challenges created by a much reduced income.
Always Look on the Bright Side…
This week’s bright side: the higher dose of steroids has blocked out the pain from my arthritic joints and tight neck after only two days. Marvellous!
Also marvellous are my friends, who have rallied round me with empathy and useful good advice (not all good advice is useful). Thank you. You know who you are.
Sunday, March 7, 2010
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.
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.
Saturday, February 20, 2010
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!
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!
Friday, February 5, 2010
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.
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.
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