We've now done 3 injections of the Enbrel. The fourth will be on Saturday. It's not been going well. PuffyFingers has screamed like a banshee during the injection and has made even more of a fuss than usual about having the injection. As she's normally rather stoic about pain I've been a tad concerned. Last night I lay awake trying to go to sleep and the thought hamster wheeling around my brain was "It's Thursday tomorrow, 2 more days until injection day".
When the injection is looming in my head it's not acceptable. Let alone whatever it might be doing to PuffyFingers.
So this morning I phoned the hospital. I left the usual detailed message on the nurse helpline. I've now called it so often I can recite all the standard information:
"It's Andy Fingers calling about my daughter PuffyFingers, that's F I N G E R S. Her date of birth is 11-06-03. She sees Dr Blah. Her medical record number is 123456. My phone number is 425 555 1234."
Then I launched into my rant:
" I can't do another injection with her screaming. I think my eardrums are getting damaged. She says it hurts so much more than the methotrexate. What can we do to make it less painful?"
Then I wait for them to call back. And wait. And wait. Normally they're really good and call back in minutes. But this went on for more than an hour. I was desperate for coffee. If I left my desk they'd phone and then I'd phone back and an elaborate game of phone tag would evolve. Then a saviour arrived in my office and offered to get me a coffee - Hoorah!
I'm extremely thankful for the coffee bearing angel (thanks Hank!) because sure enough the hospital phoned back while the coffee was en route.
It turns out that Enbrel does sting. Or rather the preservative they put in the ready made syringes stings.
Query: Why didn't they tell me this before?
Anyway we have a plan. We're going to move to the powdered version of Enbrel that we have to mix ourselves before the injection. The powdered version does not have the same preservative and therefore does not sting. The prescription for the powdered version is being called into the pharmacy. I wonder if it will have be specially approved by Steve Ballmer this time?
The mixing sounds rather fun in a mad scientist sort of way. You have to squirt the liquid from the syringe into the powder then very carefully mix it and then suck it back up into the syringe. The protein chains in the drug are so delicate you shouldn't shake it as that will cause them to break down. It appears to be the medical equivalent of nitroglycerine, one false move and it will all FDGB (Fall Down, Go Boom).
This Saturday we'll have to use the last prefilled syringe. We'll ice the injection site before and after and use the topical lidocaine and prilocaine (numbing cream). According to the manufacturers if you inject it really slowly it stings less, but it prolongs the lesser agony. I'm going to let PuffyFingers choose. Long and a bit painful or short and really painful; that's a tough one.
I'll insert ear plugs.
2 years ago