Infusion, Delayed Confusion, and the COVID-19 Vaccine
Ahh, it is finally here: infusion day. I have been waiting for over a month to have the infusion. Each day of waiting makes my body pay the price for a choice that was forced on me by circumstances. So, to understand where I am, let me start at the beginning.
My history with Rituxan
I use Rituxan (rituximab). It is an excellent medication for me. For me, inflammation is well-controlled, and I do well with it. I still must exercise; I still must use methotrexate, and I still use Nabumetone (Relafen).
But overall, I am happy with how Rituxan (RTX) works. Because of the severity of disease activity, I have used Rituxan on an every four-month schedule since the first time I was placed on it. That means I receive three infusions per year instead of a minimum of two. This every four-month dose has been a great fit.
What disrupted this happy arrangement was COVID-19. Not the virus itself. I have not had the virus, thankfully. What disrupted my comfortable pattern was getting the vaccine.
Rituxan infusion and the COVID-19 vaccine
It turns out that if you use Rituxan, especially on the maximum schedule (3 times per year), you must be incredibly careful that the vaccine will work. This statement appeared in The Lancet Rheumatology as a commentary:1
Currently, it is nevertheless recommended to offer this vaccination to these patients as soon as possible and, if possible, after a substantial period from the last infusion of rituximab (i.e. at least 4–6 months after the last infusion and 4–6 weeks before the next infusion).
This advice is consistent with the American College of Rheumatology (ACR). It reflects what my rheumatologist followed in helping me decide how to get the vaccine and make it have maximum effectiveness.
I want the vaccine to work
Before I got to that part, however, I was ready to take the vaccine. But, then I heard that Rituxan might keep the vaccine from working. I thought, oh my. I want to see my grandchildren. I want to get out of the house. I want that vaccine. But, I also want it to work.
Coordinating my infusion and vaccine
The first thing you must know is that Indiana chose not to offer exemptions for chronic disease to receive the vaccine. So, people with sickle cell, diabetes, MS, cancer, etc., were told to wait until their age band was released for vaccination.
I waited. And of course, just before I could have the infusion, my age band was released. That was when I found out about the ACR recommendations about using Rituxan and taking the vaccine. So, the question was how to fit the vaccine into the schedule suggested by the ACR.
Considerations for Rituxan
My last infusion was November 11, 2020, so waiting four months meant I could have my next infusion on March 11, 2021. But following the ACR guidelines meant that if I had the vaccine on February 23 (the day my age band opened) and my second vaccine on March 11 (21 days later), I could not have my next Rituxan infusion until April 14, 2021. Now for those who like math, here is the official statement from the American College of Rheumatology for Rituxan:2
Assuming that patient's COVID-19 risk is low or is able to be mitigated by preventive health measures(e.g., self-isolation), schedule vaccination so that the vaccine series is initiated approximately 4 weeks prior to next scheduled rituximab cycle; after vaccination, delay RTX 2-4 weeks after 2nd vaccine dose, if disease activity allows.
Note, that statement is only for Rituxan. If you want to read the full report, you can do so at the ACR information website. By the way, not all of them are so complicated, but some do require math gymnastics.
After consulting with my rheumatologist several times, I got on the schedule and had the vaccine. I decided to hold off on the infusion to comply with the direction of ACR. But, did it work?
Will the vaccine work for those on immunosuppressants?
Well, maybe? I also entered a Johns Hopkins study to determine if the vaccine is effective in people who use immunosuppressants. Seven days after my first vaccination, I was to get a blood draw at a local lab and send the results to Johns Hopkins.
Two weeks later, while I was on my way to get the second vaccination, I got the results. I had developed no antibodies for COVID-19. I was floored and so disappointed. I called my rheumatologist and asked what to do? We agreed that I would go ahead and get the second vaccine dose and stay on the course we charted. I mean, really, what other choice did I have?
Getting the second dose
Antibodies or not, I was on course to have the second vaccine, and then to alter the course would be so complicated; it would not have been possible. So, I stuck it out. And as I write this, I am left with three overwhelming issues:
- I am so hopeful the vaccine worked. I will get my second blood draw for Johns Hopkins on April 16, 2021. So, I am anxious to get the results.
- I cannot wait to get the infusion. I am hurting and dragging around, and I am so ready.
- I am struck by how much we do not know about the biological medications we use. I do not blame pharma, but we are on uncharted ground here. It seems like doing anything was a faith leap.
Oh, and one other thing. Through the support of the Arthritis Foundation, I connected with the medical reporter for The Atlantic. She did a story on the issues surrounding immunosuppressants and the COVID vaccine. If you would like to read it, do so here: COVID-19 Vaccines Are Entering Uncharted Immune Territory.
If you are interested in the Johns Hopkins study, you can read about it here: COVID-19 Antibody Testing of Recipients of Solid Organ Transplants and Patients with Chronic Diseases. Likely by the time you read this, the study will be closed but you can see what the research is about.
You know you have RA when [select all that apply in your experience]: