A few weeks ago marked
the six month point in my relationship with Humira. I haven’t talked
too much about my experience with this drug, in part because it
(thankfully) hasn’t been anywhere near as dramatic as my
relationship with my frenemy, Prednisolone. So far.
I wrote about starting
Humira back in this post - http://foodlovingcrohnie.blogspot.co.uk/2014/02/here-goes-nothing.html. It was a very difficult and anxiety filled
time, and I had to jump through a lot of hoops and have a lot of
fights with the hospital (which included effectively firing my
consultant) to try this route. Humira is a “biologic drug”, and
as the “biologics” as they are often referred to are the new kids
on the block, they are horrendously expensive, so the NHS doesn’t
exactly dole them out willy-nilly. Unlike Prednisolone, which is so
far off-patent that it is cheaper than chips. Granted, they do
completely different things, but the difference in cost between these
two drugs is the difference between a 1995 Ford Ka and buying a
brand spangley new 2014 Range Rover. There is no comparison when it
comes to money.
So on 10th
February, I started Humira under the supervision of not one, but two
different home visiting nurses to see if I could inject myself
properly with the stuff. There is no option for this stuff to come in
a pill form as your digestive system will kill it - it’s inject or
nothing. They were both lovely, and were especially gentle with
someone who was a ball of nerves. It’s not that I have an issue
with injecting myself. It’s not pleasant, but it could be worse.
But 2 ½ months into being tanked up on Pred, I was frankly, bat-shit
crazy, and I wouldn’t have trusted me with something sharp at that
point, and I’m not sure they fully did either.
The other reason they
send nurses out for your first injections is because there is a very
real risk of people having anaphylactic reactions to the stuff.
Considering my history of allergies, especially drug allergies, the
first nurse expressed real surprise that I didn’t have my first
injections in the hospital clinic rather than at home. She said that
she normally left the emergency kit in the car on visits, but with
me, she came in fully armed with adrenaline shots and portable
oxygen, telling me that with my history, she figured this would
actually be more of a comfort to me to have it handy rather than it
totally freaking me out like it does most patients. She was right.
Fortunately, I didn’t
need it. And so far (touch wood), I’m getting on okay with Humira. At
the very least, it got me off the Pred, which was the goal, and it
seems to be holding things in this biochemical remission steady. And in the grand scheme of the
very scary side-effects list for this drug, I’ve gotten off pretty
easy.
It has made my eczema a
bit worse (especially on my face, bleurgh), but being someone who has
had eczema pretty much since birth, that’s quite manageable. As
long as it stays as dry eczema (wet eczema is nasty and needs medication), it’s just a matter of slathering on
large quantities of lotions and potions, and I’m already on good
terms with Epaderm/Aveeno/Shea Butter anyway.
The injection site
bloody hurts. Stings is probably a better descriptor. But it stings
like hell. Following the advice of the nurses and various online
forums, keeping the stuff out of the fridge for an hour before hand
and freezing the hell out of the injection site (the abdomen, in my
case) for at least 20 minutes before hand and 20 minutes afterwards
helps, but it will continue to sting somewhat for at least a day
afterwards, especially if I accidentally inject it to close to where
the waistband on my jeans rubs. Ow.
But the biggest problem
is that it makes for you feel truly awful for 24-36 hours afterwards.
Truly, utterly, bloody awful. Imagine having the flu. Like the proper
flu. The “I-can’t-move-off-the-bed” kind of flu where your
whole body hurts, even you hair. But take away the fever, runny nose
and coughing. Like that.
And if you have proper flu, I need to stay far away because Humira is a powerful immunosuppressant.
And it makes me cold.
When these chills first happened, I was worried I was running a fever. But
nope. It makes me cold. This was my temperature this morning around
11:30 –
 |
Seriously. And no, I
did not have a cold drink or ice cream first. It’s still stupid hot
out and I’m wearing a hoodie and sitting with the heating pad on my
back for the muscle ache. Brutal.
The feeling like crap thing is
apparently almost universal with Humira users. The side effects leaflet lists
this as a “common” side effect, affecting at least 1 in 10
people. A look around on social media or a chat with a nurse familiar
with the stuff will tell you that this is pretty universal. I was
warned. They were right.
6 months on, I can’t
say that I’m any more used to it, but I would say that I’m more
prepared for it. I pretty much have to schedule things around this 36
hour period to save myself a lot of hassle. Initially, I was having
the injections every other Monday morning as that was when the first
nurse came. I moved that back to Sunday evenings so that I could at
least attempt to sleep off the worst of it. And now that I’m back
at work full time, that involves having to re-work a lot of things
around it. My manager has fully agreed to me working from home on
those days, and I try to work it so that I’m not doing anything
particularly taxing on those days, just things like proof-reading my written
work, or reading reports. And I’ve learned to make sure that I’ve
done as much as I can around the house over the weekend so that I’m
not staring at dust bunnies or a dirty kitchen while feeling sorry
for myself, because it's enough just to get the rubbish out on Monday night. And I’ve learnt to cook enough food the day before so
that all I have to do is re-heat things for dinner, or at most, make
rice or a jacket potato to go with it.
In effect, Humira has forced
me into the art of what I call “spoon conservation”. For those of
you not familiar with Spoon Theory, go here - http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/.
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| A search for "spoon conservation" will bring up pictures of spoon-billed sandpipers. Rather cute, really. |
Effectively, I know
full well that every other Monday, the cutlery drawer will be
virtually empty, and I have to just accept that and work with it. Unlike
when I was sick in the full blown Crohn’s flare, at least this has
a schedule. And I’ll take it over Prednisolone any day.
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