Once again I find myself stuck in the frustrating land of “biologic limbo,” AKA waiting to start a new biologic medication after the latest one failed. My last dose of Humira was back in mid-January and I’m sad and depressed about its failure, especially when it had worked well the first time I was on it 10 years ago. My rheumatologist and I both hoped that it would work again, after the disappointing trials and failures of Actemra and Xeljanz. There were periods of Remicade and Orencia as well during those 10 years, but all of that is a long and probably boring story (and I think I wrote about it in a previous article).
Anyway! Unfortunately, Humira did not do an effective job recently like it did the first time around, and with several flare-ups, every time I attempted to taper down on prednisone, my doctor and I decided we had given Humira a long and good enough second try. Onto the next: Rituxan.
According to The American College of Rheumatology, Rituxan (rituximab) is used in combination with methotrexate to treat RA that has not responded to one or more types of treatment, including anti-tumor necrosis factor (TNF) blockers, such as Remicade, Humira, Enbrel, Cimzia, and Simponi.
But unlike TNF inhibitors, Rituxan works a bit differently. The drug targets the protein CD20 on the surface of the body’s B-cells, which are part of the immune system. These B cells produce antibodies, which are proteins that allow the body to remove infectious or other dangerous particles. People with RA and other autoimmune diseases produce B cells that don’t work as they should, which results in a person’s own body attacking itself and causing inflammation. By temporarily removing the harmful B cells, Rituxan can help control arthritis inflammation.
Since the TNF inhibitors that I’ve tried in the past no longer seem to be working (Enbrel, Remicade, Humira), and because Orencia, Actemra, and Xeljanz also failed, I’m eager to try a new approach. However, with each biologic failure, I grow more and more nervous about running out of options. Taking prednisone the rest of my life is NOT an acceptable option, as far as I’m concerned, so I continue trying the biologics that are left for me. With all of my heart and soul and being, I hope that Rituxan will be the one that finally works again.
My hope has been dampened, however, since speaking with my rheumatologist’s nurse over the phone last night about the possible side effects and adverse effects of having Rituxan infusions. I’m neurotic about side effects and adverse effects anyway, but the fact that she kept emphasizing the possibility of a drug reaction during my first infusion only served to worry me out more. I actually wasn’t that nervous before talking to her, but her precautionary warnings during our phone call only made the hypochondriac wheels in my head start spinning. Oh great, I’m going to have a reaction and die during my seven hours of being chained to an IV bag. This is not how I want to go.
Yes, I said seven hours. I think my exact words to the nurse after she relayed that number was, “Oh my God, WHAT?” Seven hours? Three hours for a Remicade infusion in the past was bad, but now that seems like a piece of cake. What am I going to do sitting there in the infusion center for SEVEN HOURS? It would be great if I could get knocked out with some nice sedatives but I highly doubt that will happen. “Bring a book,” the nurse cheerily suggested. Oh, thank you, I will. And I’ll smack you with it.
Being hooked up to an IV for seven hours sounds bad, but it’s nothing compared to the terrifying information on the Internet describing the possible side effects of Rituxan. Now, I don’t want to scare anybody prematurely or unnecessarily, of course, but if you’re supposed to start Rituxan and you haven’t yet, I’d caution against looking up too much information online. The Internet likes to horrify people into thinking that they’re going to die at any second from some terrible, excruciatingly painful disease or condition. Usually, that self-diagnosis is very wrong, I’d argue. But still, reading the list of possible side effects from Rituxan made me reach for my glass of wine and wish I had about 10 more bottles next to me.
So what are these side effects/reactions? According to Rituxan’s website, the more common reactions during treatment include: chills, body aches, tiredness, low white blood cell counts, aching joints, and more frequent upper respiratory tract infections. These don’t sound too scary.
The more serious and life-threatening reactions from Rituxan are pretty frightening: Tumor Lysis Syndrome (TLS), serious infections, heart problems, kidney problems, serious stomach and bowel problems, low cell counts, severe skin and mouth reactions, reactivation of Hepatitis B Virus, and the rare Progressive Multifocal Leukoencephalopathy (PML).
Again, I don’t want to scare anybody into not trying this medication if it’s something you need (myself included). I know that all of the biologic medications have certain risks, many of them serious and life-threatening. Usually, I try to compartmentalize that information and hide it away in some far corner of my brain, instead focusing on how much my quality of life depends on using these drugs.
During the 14 years that I’ve taken biologic medications, I’ve been very lucky that I haven’t suffered from any side effects or bad reactions. And while I’m extremely nervous about starting Rituxan soon, I’m praying that the same pattern (or luck) will hold true for this medication. However, this time I’m going to speak with my rheumatologist about my concerns and fears before I get hooked up to that first infusion. Hopefully, my fears are exaggerated, like they usually are, and all will go smoothly.
How about you, my fellow Rituxans? What kinds of experiences have you had with the drug?
UPDATE! A day after writing this article, I decided to call the infusion center and speak with one of the nurses about my Rituxan concerns. With great relief, I listened to her explain to me that the more serious possible side effects of the drug (TLS, kidney problems, heart problems, PML, etc.) don’t apply to RA patients, but more commonly affect cancer patients. She calmed my fears about having a reaction during the infusion, too. OK, whew. She also told me to stop looking at the Internet. Ha!