Today I came home from my rheumatologist's office with three boxes of Humira.
We've been talking for a few months now about trying something other than Enbrel, and since the Plaquenil we added after my last appointment has only helped a bit, we've decided to give Humira a try. A sudden and scary flare which took about three weeks to permanently deprive the knuckle of my right ring finger of almost its entire range of motion was a sign that it was time.
(Luckily, my doctor had the regular syringes in her fridge and not the auto-injectors, which I've admittedly never used but which kind of creep me out.)
I feel oddly sad. Not because this means my disease really has gotten worse - though I suppose there's some of that - but because, well, I'm sort of going to miss Enbrel. I have a strange emotional attachment to the stuff, I suppose because it has made such an incredible difference to me for so many years. Ten, in fact, and I know that's a long time in the world of biologics. It's also more than a third of my life so far.
No drug is perfect, and barriers to access remain a huge problem with biologics. But when I think about Enbrel, I focus on the people whose research made those ten years so much better than they otherwise would have been. Without Enbrel, I honestly don't think I'd have been capable of doing some of the things I'm most pleased and proud to have done. Enbrel has been with me in four different apartments, five different countries, and on countless sleepovers and weekends away. All with zero side effects. I know I got really, really lucky, and I'm so grateful.
A friend of mine worked for a while at the Banting House Museum, the home of Sir Frederick Banting, who discovered insulin. She told me once how diabetes patients and their families would often be overcome with tears when they visited the study in which he did much of his work. I feel much the same (and if I ever met one of the team who originally worked on Enbrel I know I'd cry my face off). A bit weepy at the thought of saying goodbye, and full of gratitude for everything Enbrel has given me.
I'm moving on to Humira with an open and hopeful mind, but I'll never forgot what a breakthrough Enbrel was for me.
3 comments:
Changing away from a medication that has worked so well has to be difficult. I do understand. And I'm touched by your feelings for the scientists who worked so hard to create Enbrel. I've never really thought about that before, Helen. Thank you for making me more aware.
I hope Humira works as well as Enbrel did--and for at least another decade.
Hugs for you, Helen. :o)
I'm in the process of switching from Enbrel to Humira. However, I've only been on the Enbrel for six months and it hasn't been working for me. I hope you get at least 10 more years out of the Humira!
Hi Helen,
Thanks for this post. I had to move on from Enbrel after only a year, but, like you, I'm so thankful for the people who work on these drugs. I can't help but think about them; partially because I'm fascinated by medicine, but mostly because they're the reason I'm able to keep moving!
Good luck with Humira! May it work for you as well as my new drug is working for me!
:) L
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