Another setbackLast 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
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.
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!
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
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!