Biologic #8: Starting Simponi
I’m about to start another new biologic medication, monthly injections of Simponi, which will be my eighth biologic since I first began taking them in 2002. It’s hard to believe that I’ve been on these powerful drugs for that long and that I’m on #8 now. And two of them, Remicade and Humira, I’ve taken twice over the years (and can’t take again). I’m also finding it hard to believe that I’m getting so close to running out of biologic options. This is a stressful, worrisome, and scary spot to be in because biologic drugs have been the only effective forms of treatment (other than prednisone) for me since being diagnosed with RA 20 years ago. I hope so much that Simponi will finally be the medication that works and for a good length of time. My RA has been unstable and I’ve been in a frustrating state of “limbo” for way too long now–about five years, I think.
A snag with the medication?
Despite my hopes about Simponi, there has already been a big “snag” with this medication. I’ve had to delay starting it by two months due to illness and taking antibiotics twice for a stubborn upper respiratory and throat infection that dragged on for weeks this winter. Then not long after finally finishing the last antibiotic, a strange thick and nagging cough popped up that I’ve been trying to wait out, wishing for it to just go away on its own. Unfortunately, it doesn’t look like it will be fading away by itself anytime soon.
Infections caused delay
So! Here’s an update on the cough and Simponi situation: I saw my primary doctor a few days ago and even though she thinks this loose and nasty-tasting cough is virus-related, she wanted to put me on an antibiotic again because of my compromised immune system. The last two rounds of antibiotics this winter were Augmentin but this third time it’s my old friend the Z-pack (azithromycin). I really, really hope that THIS will now be the end of the sickness and antibiotics for a while. I need a break!
Looking back during all of these years of taking biologics, I realize that I’ve been very fortunate that things have gone mostly smoothly with all of them. With the exception of Rituxan (which is the last one I’ve taken), I haven’t had any reactions, interactions, or side effects. I feel incredibly lucky for this because I know that many people have suffered from biologic reactions and side effects which have prevented them from being able to take certain drugs, and have therefore inhibited or limited their treatment choices.
The reaction/interaction I had from Rituxan wasn’t extremely severe for me, really. I had a mild and irritating (itchy throat) allergic reaction each time during the infusion which went away once I was given additional Benadryl and steroids. However, a reaction that always happened the evenings of my Rituxan infusions was that I developed a pretty excruciating headache that would last at least a couple of days. This head pain was difficult to deal with but I rationalized that I could put up with it every six months if the drug could successfully control my RA. Unfortunately, Rituxan was not the effective “wonder drug” treatment that my rheumatologist and I were hoping for, which leads me to trying Simponi next.
During this long and unpredictable biologic journey, what might Simponi soon bring to me? My hope, just as it is every single time I’m about to begin a new treatment, is that this will finally be the drug to get me back on track. And by “on track,” I mean and hope for my RA to become stable and under control again like it was for several years in the past–and good enough to finally take a long and much-needed break from my daily dose of prednisone. I also hope that my good-luck record of not having side effects or problems from biologic medications will continue with #8. That is, if I can ever get off antibiotics long enough to get started!
The RA “road” is a long, erratic, and winding one that never ends; the “biologic road” can feel similarly long and full of twists and turns. Whatever happens with my RA, I know that I can handle it and I’m so grateful to have a rheumatologist who continues to travel that road along with me, helping to navigate biologic treatment decisions with much patience, support, and kindness.