Rituxan Ready?

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • the.living.rheum
    1 year ago

    Hi Angela, how did your infusions go?

  • Wren moderator
    2 years ago

    Hi, Angela,
    I took Rituxan for a year. I had a mild reaction during the first infusion; they stopped it, gave me more benedryl, waited until my itchy skin reaction went away, and restarted the infusion. I had no further problems. During my second infusion, six months later, I had no problems at all.
    Unfortunately, the drug only worked briefly for me, so I’ve moved on to a different biologic. But as you wrote, they all have the possibility of serious side-effects built in. The thing to remember is that the actual number of people who have those side-effects happen to them is very, very small compared to the number that don’t. And this drug just might slow your RD down enough that the ongoing damage and symptoms will slow or stop entirely. Quite a win there–and something to think about.
    I hope your first infusion goes well. I brought my Kindle, a book, and some snacks with me. Also my phone, equipped with social media. The time actually went by pretty fast.
    Wishing you the best of luck with Rituxan! 🙂

  • GingerS
    2 years ago

    Hi Angela, With the thought in mind. That everyone is different, I will tell you this. I have been on Rituxan for a year and a half. With very good results. I do have flares but they are minimal from where I started from. We were (Dr and I) that I would not have any negative effects from Rituxan. The only one I am dealing with is UTI’s. I see my Dr in a week. He might change my med or not. Meanwhile I’m on antibiotics. Sooo you definately should talk to a different nurse about the infusion.
    When I get my infusion. The nurse gives me Benedryl 50mgs Iv push. She tried depo medrol but my body didn’t like it. Also it is given in a graduated dose. So every 10 mins or so they speed up the IV. Then watch to be sure I can tolerate it. The infusion time is 3 hours.
    The thing about side effects. Is that if even one person ..say has had a headache. It has to be reported. To me life without Rituxan would be alot worse. I would be back in screaming pain. Unable to move without crying and so on.
    I hope this helps. Try to have a positive attitude towards it. And hold the negatives at bay. Whatever happens you are a strong woman and can deal with it. I would love to hear how it all turns out. 🙂

  • Laura
    1 year ago

    Hi… I had my first two rituxan infusions in April. Then in May I had tons of bladder issues. Thought I was going crazy. UTI one after another. Finally got them cleared up. Just had my second set of infusions. Keeping my fingers crossed that I don’t have the same problem again. People really don’t get all the issues we go through just to try to feel a little bit normal.

  • Erin Rush moderator
    1 year ago

    Hi Laura! I am sorry you had such uncomfortable bladder issues this Spring. I also hope this second round of infusions has no serious side effects! Thanks for sharing and good luck! Best, Erin, RheumatoidArthritis.net Team Member.

  • JaneK
    2 years ago

    I knew for about two years that I needed to start Rituxan (had tried everything else but none had worked well since Humira stopped working after six great years of success). I had had a previous serious side effect from an RA drug that put me in the hospital with pneumonitis) so I was very wary about the daunting side effects list for Rituxan. I had already had a “rare” reaction to a previous drug so that changed how I viewed the likelihood of serious side effects happening.

    In the end it was the RA itself that convinced me to start Rituxan. I had gotten increasingly unable to do even the simplest things and very worried about the future – more worried than I was about Rituxan. Last August I had my first two infusions. With the first I did experience chills. The nurse slowed the infusion rate and gave me some Aleve (I was given Tylenol and Benadryl before the infusion began). Afterward I felt like I had a mild ‘flu for a few days, then recovered back to my pre-Rituxan self. The second infusion I was given prednisone with (I think they didn’t the first time because I am diabetic and it is unfriendly to my blood sugar) and I had no adverse reactions at all, nor the ill feeling afterward. I estimate that I got about 20% improvement from these first infusions. Something…but not enough. In February I got the second set. Again I was given a steroid with and had no effects during or after. About three weeks after the second infusion I started to experience a vast improvement. I no longer need a cane or walker to get around (used one every step the previous year and a half) and had no pain upon standing or lifting my arms, things that always hurt before.

    I don’t know if the delay in improvement (not until after second set of two infusions) may have been partly due to the fact that I cannot take methotrexate anymore, and I realize generally Rituxan is given with it. At any rate, I am only sorry now that I waited so long. Maybe I had to get desperate enough to get over my fear but now I regret the wasted two years when I could have been feeling so much better.

    Best wishes to you! And thankfully it’s only the very first infusion that takes so long. The others will run more like 3 to 4 hours.

  • the.living.rheum
    1 year ago

    It’s good to know that the second round of infusions worked better than the first. I got about three good weeks out of the first round. I just wrapped up my second round and am hopeful it will kick in soon!

  • redthread
    1 year ago

    I just started Rituxin. Have run through the alphabet of RA drugs, most notably I had a great years long run with Remicade which nothing else has ever matched. I had a itchy chest, neck reaction with the first infusion, then some nausea with the second infusion, but it was really no big deal. I brought my laptop and watched Netflix the whole time. (I didn’t have to feel guilty about binge watching!) I’m currently having a major flare, so I’m waiting to see how this all works out. I can absolutely relate to the nagging fear that this won’t work, and that I’m running out of options.

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