Last Wednesday, Caitlin had her second infusion of Tocilizumab (Actemra). In a
nutshell – I give it a thumbs up and we are very hopeful! The whole experience
was a huge improvement over the first infusion – which was naturally, a bit
unnerving. Having one under her belt, Caitlin was much calmer and prepared when
we went to the hospital this time.
The nurse spent some time with me at the start of our session to find out about the
drug and Caitlin’s history. She’s the first patient they have had on this med….but
the nurse was very thorough and went online for some education prior to hooking
Caitlin up. She was a bit alarmed by the directive to have the epi-pen standing
by, but she is used to potential allergic reactions to biologics. Not sure how
accurate this is, but she says the second infusion has the greater likelihood
of reaction, because your body has had the chance to build up some tolerance…..
so that had me a bit on edge.
We loved the nurse and some things that made her rock – she used spray lidocaine –
so Caitlin never even felt the IV go in. She didn’t spill a drop getting the
blood samples out, despite needing several vials. She lightly rubbed cotton
over the tape before taping the IV in place, so it would be easier to peel off.
She used a foam block under Caitlin’s elbow – but she has a fear of bending her
arm with the IV in. She used adhesive remover at the end of the session to help
get the IV tape off. She offered coband (that stretchy dressing tape) instead
of paper tape to hold the cotton over the IV spot after the IV was removed…
this is a big plus in Caitlin’s book because that paper tape always pulls the
skin so badly. AND – she knew how to use the Playstation so we could watch
We were in and out in three hours flat! No allergic reactions, no side effects.
The other great news is that Caitlin seems to be responding well. We are cautiously
optimistic, because Caitlin had a big dose of solumedrol at her first infusion
on June 30… and that would certainly kick some of the inflammation back. But
the labs that they drew at the beginning of infusion #2 all came back NORMAL…
and inflammation is way down in her knees, ankles, wrists and neck.
As I write this – Caitlin is at arthritis camp. The only meds I sent with her were
Zyrtec and Tylenol. Methotrexate is after she gets home… and we gambled that
she won’t need the vicodin while she is there. This is a pretty major
turn-around from a month ago…..
So far, so good! Infusion #3 next week…..