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!
Showing posts with label pharmaceuticals. Show all posts
Showing posts with label pharmaceuticals. Show all posts
Monday, June 28, 2010
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!
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!
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!
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!
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