A Patient’s Perspective on Actemra (tocilizumab) for Autoimmune Encephalitis

Actemra (tocilizumab)

Many people have been asking me about Actemra (tocilizumab) given that I started a monthly regimen of it a few months ago. Below you’ll find some common questions I’ve received.

Please note that while I have taken steps to ensure the accuracy of the information below, I am an autoimmune encephalitis (AE) patient and NOT a medical professional. The following does not constitute medical advice, and is not a substitute for your own research or having a discussion with your own doctor.

What is it?

Actemra is a biologic medication, just like Rituxan (rituximab). More specifically, it’s a monoclonal antibody that binds the interleukin-6 receptor and inhibits the activity of the cytokine interleukin-6. This prevents IL-6 mediated inflammation.

Translation: It’s a powerful (and expensive) way to suppress the immune system. You take it by IV or subcutaneous injection.

When is it used?

In the autoimmune encephalitis (AE) world, Actemra is considered to be relatively experimental. It’s reported about in the medical literature far less than the other usual suspects (steroids, IVIG, plasmapheresis, Rituxan, Cytoxan (cyclophosphamide), Cellcept (mycophenolate mofetil), Imuran (azathioprine)). However, from conversations with other patients and caregivers I have noticed a steady uptick in usage of it in the past few years, especially across the United States. My AE specialist considers Actemra as another second-line option to treat AE, with a similar side effect profile in comparison to Rituxan and lower side effect profile in comparison to Cytoxan.

In my case, Actemra was added to my medication regimen 7 years after I first got sick (and 2 years after I received my seronegative AE diagnosis + started immunotherapy). By this point I had proven to be refractory to Rituxan alone, relapsing in spring 2020. For now, my AE specialist has decided to add monthly Actemra infusions into the mix (rather than using it to replace Rituxan), and after navigating through some insurance issues we recently added in monthly high dose IVIG, too. I receive each medication spaced out at least a few days apart.

How is it administered?

I receive Actemra as a monthly IV infusion run over ~1 hour (pretty quick compared to IVIG and Rituxan!). My neuro does not premedicate me with Tylenol and Benadryl, the way she would for Rituxan. Apparently they’re unnecessary for Actemra because the medication is a humanized monoclonal antibody that patients rarely have a reaction to, versus Rituxan which is a chimeric monoclonal antibody partially made up of mouse protein. This mouse component of Rituxan is what is typically responsible for any infusion reactions.

I have also spoken to a handful of other AE patients who take their Actemra as a subcutaneous self-injection. However, my doctor is not convinced that this formulation is as effective as the IV one for AE.

How am I doing on it?

With three monthly Actemra infusions under my belt, it’s hard to tell for sure. So far I have noticed a quick response to it within the first 48 hours after receiving it—my anxiety melts away, and my cognitive processing starts to become less foggy. However, these effects are short-lived; less than 2 weeks later the positive impacts tend to wear off. But these are still early days to be drawing any firm conclusions. My neurologist feels that I will continue to have better and more sustained benefit from it in subsequent months.

I’ve tolerated the infusions without any noticeable side effects; in fact, I can go on and have a relatively normal day without crashing on the couch the way I need to after Rituxan. As for my bloodwork, the medication has caused a mild neutropenia (which I’m told is to be expected).

Further Reading

Helpful articles I used to inform my own understanding of Actemra for AE include the ones below:

  1. Tocilizumab in Autoimmune Encephalitis Refractory to Rituximab: An Institutional Cohort Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5081109/
  2. Interleukin-6 Blockade as Rescue Therapy in Autoimmune Encephalitis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5081126/
  3. Tocilizumab in Refractory Autoimmune Encephalitis: A Series of Pediatric Cases https://www.pedneur.com/article/S0887-8994(18)30366-7/fulltext
  4. Teratoma Removal, Steroid, IVIG, Rituximab, and Tocilizumab (T-SIRT) in Anti-NMDAR Encephalitis https://pubmed.ncbi.nlm.nih.gov/32880854/
  5. Clinical Approach to Autoimmune Epilepsy https://www.thejcn.com/DOIx.php?id=10.3988/jcn.2020.16.4.519
  6. Efficacy of Tocilizumab in Limbic Encephalitis with Anti-CASPR2 Antibodies https://www.hindawi.com/journals/crinm/2020/5697670/
  7. Tocilizumab in AE https://aealliance.org/tocilizumab-in-ae/

Leave a Reply

Your email address will not be published. Required fields are marked *

The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with chronic illness. It is for general informational and entertainment purposes only, and does not serve as a substitute for consulting with your own healthcare professionals or conducting your own research. It is not intended to serve as medical advice, or to be used to diagnose, treat, cure, or prevent any disease. While every effort is made to provide accurate information on the subjects discussed, no responsibility is assumed for any errors or omissions in the content. Always seek the advice of a qualified healthcare professional to assess and guide your medical care.

%d bloggers like this: