Three weeks ago I finally got off
Prednisone for the first time in 5 months. We spent weeks reducing it verrry
slowly, and were surprised that I mostly held it together even once we got the
dose all the way down to 2.5mg every other day. I was very relieved to have the
Prednisone side effects fade, and was hopeful that maybe I could get by without
it for a little while. Unfortunately, “a little while” turned out to be about a
week and a half, when I noticed that my airways were more irritated and I was more
fatigued. I started having coughing fits again, at times my oxygen would dip
with exertion, and I had a few random low-grade fevers. It was unclear how much
was due to allergies and how much was CF related, but something clearly wasn’t
right. I reached out to my doctor, and on Tuesday I resumed taking 10mg of
Prednisone a day. That didn’t seem to have much impact, however, so Friday we
bumped me up to 40mg. I’m still not 100%, but the higher dose is definitely
helping, B”H.
I just finished 3 days at 40mg, and as
long as I continue feeling better the plan is to drop the dose by 10mg every 3
days until I get to 20mg. At that point we’ll probably slow the taper as we gradually
bring me down to a long-term maintenance dose, hopefully not more than 5mg a
day. I really wish I could choose my Prednisone side effects. I appreciate having
more energy, the increased appetite is good for me, and of course the whole breathing
thing is nice. But it also disrupts my sleep and makes me painfully bloated, so
that’s a bummer. I’m not thrilled that I’ll probably have to be on Prednisone
pretty much permanently, but hopefully I’ll be able to function with a low
enough dose that the negative side effects won’t be too bothersome.
Fortunately, I actually got a few good
months in this time before slipping, and I tried my best to get out and about
and enjoy myself while I could. Hopefully we’ll be able to pull me back
together with just Prednisone this time and I can continue adventuring for at
least part of the summer!
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