The first appointment of three today was the lung function. The
lung function has improved since last time, but that isn't a surprise
as I have felt an improvement with the amount of exercise I'm able
to perform. The only exception was the peak flow which is pretty
much the same even slightly lower than before.
The next appointment was with the lung specialist who was please
to learn that my lung function had improved. He was keen to have
the steroid dose lowered from 50mg to an alternating dose of 30mg
Finally, the hematologist. I'm back to seeing Francesco again. We're
lowering the steriod dose as the lung specialist suggested, alternating
daily between 30mg and 50mg for the first week or ten days, then
reducing the dose to 30mg and 40mg.
In fact, three days after the last appointment when we reduced the
steroids from 60mg to 40mg I started to feel the symptoms of the
constant dry cough that I had prior to taking the steroids. Feeling
that perhaps we'd reduced the dosage by a large step of 20mg, I
upped the dose back to 50mg. That made me feel better.
Apparently when the steroid dosage is reduced one can get certain
aches and pains, and so I'm more aware that if it happens again
then I should try and keep on the new dose and see if the symptoms
improve. So far, I've been on the current alternating dose for just
over a week and feel ok. There is a little of the wheeziness that
I have before but it is negligible.
PCR Looking Good
Last appointment's PCR didn't look that good at the time, although
the sample size wasn't too good. When the sample size of the blood
taken for the PCR test isn't so high, there is considerably more
inaccuracy in the PCR figure. This weeks result had a much better
sample and reflected the same PCR figure as before of 0.005.
This is also good news, as I'm still keeping the anti leukaemia
or graft vs leukaemia effect, which was a major concern of mine
prior to starting on the streoids.
The white count appears to be high, but it's a result of the steriods.
In normal circumstances without steriods, there are a lot of white
cells on the walls of the viens. The use of steroids causes these
white cells to 'fall off' the vien walls, therefore presenting more
white cells in to the flowing blood. When the blood sample is taken
there are therefore more white cells in the sample.
Having reduced the level of steroids, the side effects are much
more minor. I've still got the puffiness around my face and cheeks
which apparently makes me look younger. The skin has improved notably,
but my hair has been thinning too. I'm still pretty light weighing
in at around 69-70 kgs. My legs are really thin (for me) as are
my torso and arms. Still that doesn't stop me from keeping active,
but I definately feel I am considerably weaker.
The hyperactivity has gradually subsided, and I'm feeling more weary
and lathargic again. I'm still keeping busy, but it's taking more
effort. I've lost that high the steroids give so I'm feeling the
effects of doing exercise, in tired muscles, aches, and general
The funny things is that I'm able to eat pretty much what I want,
and over Christmas haven't really put on any pounds. Well every
cloud has a silver lining.....