> ## Content Index > Fetch the complete content index at: https://achronicvoice.com/llms.txt > Use this file to discover other available public pages before exploring further. # An Anaphylaxis Reaction from Rituximab in Between Shady Years - URL: https://achronicvoice.com/anaphylaxis-rituximab/ - Published: 2017-07-12T08:10:41.000Z - Updated: 2025-10-15T14:41:38.000Z - Author: Sheryl Chan - Tags: Chronic Illness, Pain Management, Healthcare, Medical Research ## Welcome to Adult Life (Chronic Illness Version) I entered my adult years in turmoil, no thanks to Systemic Lupus Erythematosus (Lupus). At 20 I developed epilepsy, then leukopenia, crippling arthritis pains, and endometrial polyps in the years to follow. Some of these were a direct result of my chronic illnesses, and others were from side effects of medications taken to control them. I needed blood transfusion at one point as my red blood cells had self-destructed to a dangerous low. As I have [**Antiphospholipid Syndrome**](https://achronicvoice.com/antiphospholipid-syndrome-diagnosis-a-to-z-guide/) (a blood clotting disorder), many potential treatments were unfeasible as well, due to medication interactions. To take it a step further, my blood type is O negative, and contains rare [autoantibodies](https://my.clevelandclinic.org/health/symptoms/autoantibodies). It took the doctors 2 days to find me a compatible pack of blood from a different hospital. *\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!* Pin to Your Allergy, Lupus & Medication Boards: ![An Anaphylaxis Reaction from Rituximab in Between Shady Years](https://cdn.achronicvoice.com/anaphylaxis-reaction-from-rituximab.jpg) ### When No Treatment Seems to Work for Lupus My face was a swollen balloon, as a result of being on [**high dose steroids**](https://achronicvoice.com/high-dose-steroids/) to control the Lupus flares. It was a demoralising period, especially when everyone else around you is enjoying their prime years of health and beauty. But I didn't have a choice, as no other [immunosuppressive drug for Lupus](https://www.hopkinslupus.org/lupus-treatment/lupus-medications/immunosuppressive-medications/) (Johns Hopkins Lupus Center, n.d.) worked for me. We had exhausted almost every option, including the big guns like mycophenolate, azathioprine and cyclosporine at maximum dosage. Read Related Posts: - [It’s Just One of Those Nights (Poetry on Steroids)](https://achronicvoice.com/one-of-those-nights-poetry-steroids/) - [We Want to Have Fun Just Like You, But Here’s What it Takes with Chronic Illness](https://achronicvoice.com/want-to-have-fun-chronic-illness/) - [A Page From a Sick Girl’s Diary: Sometimes I Wish I was an Old Person](https://achronicvoice.com/sick-girls-diary-wish-old-person/) - [Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth](https://achronicvoice.com/loss-of-identity-chronic-illness/) - [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/visible-evidence-invisible-illness/) ## Rituximab, Side Effects Include: Death My rheumatologist then suggested trying rituximab - a new biologic drug in Singapore back then. I would only be the seventh patient in the hospital to try it, and the side effects included death. The brand ([Rituxan](https://www.rituxan.com/)) even states that upfront on their website (Genentech, Inc., n.d.). It would also cost a 'mere' $10,000, with no guarantee of success. A tempting offer I must concur, but I didn’t have many options left on the table. It was either this, or one of two other drugs - one that can cause permanent infertility, and the other morphs you into a man, complete with an adam’s apple and all. Other IV treatments would cost even more. My parents encouraged me to try it out, so we scraped together some money, and I said "yes". ### A Bit More About How Rituximab Works [B-cells](https://www.sciencedirect.com/science/article/abs/pii/S135727250900288X) play an important role in our immune system, but in patients with Lupus (SLE), they can become autoreactive and attack the body instead (Nashi et al., 2010). [Rituximab](https://www.frontiersin.org/journals/oncology/articles/10.3389/fonc.2018.00163/full) is a [biological agent](https://my.clevelandclinic.org/health/treatments/biologics-biologic-medicine) (derived from organic sources) that targets B-cells. It was first created to treat cancer, namely lymphoma (Cleveland Clinic, 2024; Pierpont et al., 2018). Now, it is often used off-label to treat other medical conditions, such as [treatment-resistant Lupus](https://www.the-rheumatologist.org/article/rituximab-as-maintenance-therapy-for-difficult-to-treat-sle/) (Nierengarten, 2020). ### My First Taste of Rituximab Rituximab is taken intravenously, in 2 doses 2 weeks apart. The amount you need is titrated based on your body weight. It was a little scary watching the translucent liquid enter my vein, and I started to feel nauseous after a while, which is a common reaction. We managed to complete both courses at a slower transfusion rate, and I waited for good news. For the other patients the results had mostly been fantastic, but my red blood cells started to break up again after only 4 months. ## Consideration of Wilder Options to Manage My Lupus The following year, my doctor referred me to a top haematologist for a second opinion. He wanted to know if [hematopoietic stem cell transplant ](https://primaryimmune.org/understanding-primary-immunodeficiency/treatment/hematopoietic-stem-cell-transplantation)(HSCT) (a.k.a. bone marrow transplant) (Immune Deficiency Foundation \[IDF\], n.d.) was an option for me. However, she thought that that would be a bit of an overkill. She discussed yet more options with me, including: - [Splenectomy](https://www.mayoclinic.org/tests-procedures/splenectomy/about/pac-20395066) (spleen removal) (Mayo Clinic, 2022), - [pulse cyclophosphamide](https://journals.sagepub.com/doi/10.1191/096120301671376017), which is extremely toxic (Takada et al., 2001), or - another round of rituximab. ### The Risks that Came with These Treatment Options The risk for splenectomy includes excessive bleeding and [splenic vein thrombosis](https://radiopaedia.org/articles/splenic-vein-thrombosis-1) (Fahrenhorst-Jones, 2023), and I’m already [**at risk for DVTs because of my blood clotting disorder**](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/). The remission rate wasn’t fantastic either at 30%, according to said haematologist back then. HSCT would be the most drastic option, with an apparent 75% remission rate. But all these trials were only done in the U.S. back then, although some of the success stories were amazing. Some of the participants managed to stop taking anticoagulants for good, which would be a dream come true for me! These were extreme cases however, where they didn't have much choice but to risk it. Read Related Posts: - [How Many Times Can You Hit Rock Bottom with Chronic Illness?](https://achronicvoice.com/rock-bottom/) - [The Extra Costs of Living with a Chronic Illness or Disability (That the News Often Don’t Reflect)](https://achronicvoice.com/extra-costs-living-chronic-illness-disability/) - [Chronic Illness is Expensive, but Here’s the Real Reason Why](https://achronicvoice.com/real-reason-why-chronic-illness-expensive/) - [The Lowdown on Medications and Antiphospholipid Syndrome (Warfarin, Enoxaparin, DOACs, NSAIDs & More)](https://achronicvoice.com/medications-and-antiphospholipid-syndrome/) - [How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body/) ## Rituximab Round 2 Began Nice and Slow... So we decided to give rituximab one more go, and slotted another $10,000 into the health poker machine. I checked myself into the hospital, and prepared to chill out as it transfused over the next 4 - 6 hours. And then it started. I had a mild sore throat, which was strange. "I must be dehydrated. Let's drink more water", I thought to myself. ### The Anaphylaxis Symptoms were so Insidious, It Made Me Doubt Myself The sensation escalated to that of a wedge stuffed down my windpipe, making it difficult to breathe. I still thought that my mind was playing tricks on me, and tried to calm myself down. I didn’t want to be *that* silly little girl who overreacted to every tiny shadow. “It’s just a minor side effect", I reassured myself and brushed it aside. Then I started to get funny sensations in my arms, and finally decided to inform the nurse. She didn't seemed too concerned, but said that she'd inform the doctor. I nodded and sat there with the drip still running, although my instinct demanded that it be turned off at once. I hushed the voice; once again, I didn’t want to overreact. It didn't seem likely that it might be an allergic reaction as I had done this before. Besides, I wasn't itching, which is the main indication of allergies, right? ## ...Then Everything Exploded at Once - An Anaphylaxis Reaction to Rituximab I cramped up all of a sudden, as if my period had arrived without warning, and felt like I had to relieve my bowels at once. I finally got the nurse to disconnect the drip as I ran to the toilet. I heard footsteps down the corridor, signalling the arrival of the doctors. I willed myself to hurry up, but still took long enough for them to knock and ask if I was okay. It was embarrassing to step out with no less than 10 doctors there, waiting around for me to finish my business with the loo. ### Answering "Yes" to All the Doctors' Questions for Anaphylaxis The doctor in charge sat me down and started asking questions in rapid succession. One of the younger doctors wanted to get me some paracetamol for the 'period cramps', but the senior doctor said that that wasn't a priority. This dismissal annoyed me, but I understood why later on. She examined my throat as I answered "yes" to all the questions on her checklist. By then my breathing was starting to become laboured, and those rashes that I didn't have? They finally broke out on my back, calves and ears. My eyes swelled up, and my oxygen levels fell. My heart rate spiralled out of control, and my cramps tuned up in intensity. I was sweating from the effort of it all. It was now blatantly obvious that I was suffering from a severe [anaphylaxis reaction from rituximab](https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2020.572863/full) (Fouda & Bavbek, 2020). Read Related Posts: - [Why I Need to See More Than 10 Different Types of Doctors Regularly](https://achronicvoice.com/why-need-see-different-types-of-doctors/) - [What it Feels Like to be Refused Treatment by a Hospital’s A&E / ER](https://achronicvoice.com/refused-treatment-hospital/) - [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/) - [My Personal Experiences with Epiphrenic Esophageal Diverticulum (Plus Tips to Help Cope)](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/) - [How to Prepare for a Medical Appointment in a Post-Pandemic World (4 Top Tips From a Doctor)](https://achronicvoice.com/prepare-medical-appointment/) ## Reversing the Anaphylaxis Reaction Caused by the Rituximab The doctors hurried to administer emergency medications. They hooked me up with IV [hydrocortisone](https://medlineplus.gov/druginfo/meds/a682871.html) (steroids; U.S. National Library of Medicine \[NLM\], 2016), [diphenhydramine](https://medlineplus.gov/druginfo/meds/a682539.html) (NLM, 2022), Nexium ([esomeprazole](https://medlineplus.gov/druginfo/meds/a699054.html); NLM, 2023a), and injected me with [epinephrine](https://medlineplus.gov/druginfo/meds/a603002.html) (NLM, 2023b). You know those [epipens](https://www.epipen.com/en/about-epipen-and-generic/what-is-epinephrine) (Viatris Inc, n.d.) that people inject into their thighs to stop an anaphylaxis attack in movies? They actually hurt. A lot. And never in my life did I think that I'd get to try it out. ### Anaphylaxis Reaction from Rituximab - How Long the Side Effects Lasted for Me To my relief, my body started to calm down, including the 'period cramps'. I read after, that this was a [common symptom of anaphylaxis](https://my.clevelandclinic.org/health/diseases/8619-anaphylaxis), too, as your gut and internal organs swell up (Cleveland Clinic, 2023). All the drugs they had administered made sense then. I spent the next 8 hours hooked up to the IV diphenhydramine, but was able to go home the next day, although the itching took months to subside. As for the remaining titration of rituximab? They threw it out - $10,000 straight down the drain, literally. ## “Should We Try Rituximab Again?” - Heck, No! It seems like my body was too smart for its own good, and recognised the drug from the first round of infusions. It was obvious that it didn't like it very much. My doctor suggested that we try rituximab again at an even slower transfusion rate, one quiet enough to trick my system into accepting it. But I rejected the proposal this time. If my body doesn't like it, then it can't be that good for me either, can it really? ## Sign Up for My Free Newsletter Be the first to get the latest post updates in your inbox, and unlock the comments section. You will also receive an e-book full of uplifting messages, quotes and illustrations as a token of appreciation! [Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead. Sign Up Email sent! Check your inbox to complete your signup. No spam. Unsubscribe anytime. Read Related Posts: - [My Recovery Time for Simultaneous Bilateral Patellar Tendon Rupture (With Lupus & Steroid Treatment)](https://achronicvoice.com/recovery-time-for-simultaneous-bilateral-patellar-tendon-rupture/) - [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare)](https://achronicvoice.com/mistook-dengue-fever-lupus-flare/) - [3 Types of Chronic Pain that Sound Bearable, but are Not](https://achronicvoice.com/chronic-pain-bearable-not/) - [A Roundup of Biggest Pain Flare Triggers (from 40 People with Chronic Illness)](https://achronicvoice.com/pain-flare-triggers/) - [“It’s in My Blood”: Cheyanne Perry — Living a Full Life with Deadly Allergies](https://achronicvoice.com/cheyanne-perry-life-allergies/) Pin to Your Autoimmune Disease, Anaphylaxis & Medication Boards: ![Rituximab Treatment For Lupus - My Anaphylaxis Reaction Story](https://cdn.achronicvoice.com/rituximab-treatment-lupus-anaphylaxis-reaction-story.jpg) ### References: - Cleveland Clinic. (2023, October 17). *Anaphylaxis.* https://my.clevelandclinic.org/health/diseases/8619-anaphylaxis - Cleveland Clinic. (2024, August 9). *Biologics (biologic medicine).* https://my.clevelandclinic.org/health/treatments/biologics-biologic-medicine - Fahrenhorst-Jones, T. (2023, April 17). *Splenic vein thrombosis.* Radiopaedia. https://doi.org/10.53347/rID-90836 - Fouda, G. E., & Bavbek, S. (2020). Rituximab hypersensitivity: From clinical presentation to management. *Frontiers in Pharmacology, 11.* https://doi.org/10.3389/fphar.2020.572863 - Genentech, Inc. (n.d.). *RITUXAN® (rituximab) medication for RA, NHL, CLL, GPA, MPA & PV.* Retrieved August 18, 2025, from https://www.rituxan.com - Immune Deficiency Foundation. (n.d.). *Hematopoietic stem cell transplantation.* Retrieved August 18, 2025, from https://primaryimmune.org/understanding-primary-immunodeficiency/treatment/hematopoietic-stem-cell-transplantation - Johns Hopkins Lupus Center. (n.d.). *Treating lupus with immunosuppressive medications.* Retrieved August 17, 2025, from https://www.hopkinslupus.org/lupus-treatment/lupus-medications/immunosuppressive-medications/ - Mayo Clinic. (2022, July 12). *Splenectomy.* https://www.mayoclinic.org/tests-procedures/splenectomy/about/pac-20395066 - Nashi, E., Wang, Y., & Diamond, B. (2010). The role of B cells in lupus pathogenesis. *The International Journal of Biochemistry & Cell Biology, 42*(4), 543–550\. https://doi.org/10.1016/j.biocel.2009.10.011 - Nierengarten, M. B. (2020, September 1). *Rituximab as maintenance therapy for difficult-to-treat SLE.* The Rheumatologist. https://www.the-rheumatologist.org/article/rituximab-as-maintenance-therapy-for-difficult-to-treat-sle/?singlepage=1 - Pierpont, T. M., Limper, C. B., & Richards, K. L. (2018). Past, present, and future of rituximab—The world’s first oncology monoclonal antibody therapy. *Frontiers in Oncology, 8.* https://doi.org/10.3389/fonc.2018.00163 - Takada, K., Illei, G. G., & Boumpas, D. T. (2001). Cyclophosphamide for the treatment of systemic lupus erythematosus. *Lupus, 10*(3), 154–161\. https://doi.org/10.1191/096120301671376017 - U.S. National Library of Medicine. (2016, May 15). *Hydrocortisone injection.* In *MedlinePlus*. Retrieved August 18, 2025, from https://medlineplus.gov/druginfo/meds/a682871.html - U.S. National Library of Medicine. (2022, January 15). *Diphenhydramine.* In *MedlinePlus*. Retrieved August 18, 2025, from https://medlineplus.gov/druginfo/meds/a682539.html - U.S. National Library of Medicine. (2023a, May 15). *Epinephrine injection.* In *MedlinePlus*. Retrieved August 18, 2025, from https://medlineplus.gov/druginfo/meds/a603002.html - U.S. National Library of Medicine. (2023b, November 15). *Esomeprazole.* In *MedlinePlus*. Retrieved August 18, 2025, from https://medlineplus.gov/druginfo/meds/a699054.html - Viatris Inc. (n.d.). *About EPIPEN and Its Authorized Generic. What is Epinephrine?* Epipen. Retrieved August 18, 2025, from https://www.epipen.com/en/about-epipen-and-generic/what-is-epinephrine