How can the annihilation of all the B-cells in my immune system feel like… nothing?

I expected to feel something amiss or uncanny in my body after getting my first infusion treatment. But, I didn’t! I have felt completely and utterly normal – well, at least my version of ‘person-with-pemphigus-normal.’

Since my first infusion, I’ve been riding my bike, hiking, doing yoga, working (from home), cooking, taking care of the house, walking the dogs, etc. I feel pretty good… definitely not like a person with a totally dysfunctional immune system.

What’s Going on in My Body!?

When you get a rituximab infusion, it only takes 24-72 hours for all the B-cells in your bloodstream to be depleted. That depletion begins a (roughly) 6 month period that I will live without B-cells and their ability to create new antibodies.

Sometime around 6 months after my final infusion, I’ll slowly start rebuilding my immune system. It can take anywhere from 12-18 months for a person’s immune system to return to normal after rituximab. It’s a long and risky period of immune suppression.

Also, each time I need an additional infusion, the reset of my immune system starts all over again. I am really hoping that I can reach remission after just two rounds of treatment, but it seems like most pemphigus patients need more than that.

What About the Pemphigus Symptoms?

As far as improvement of my pemphigus symptoms, rituximab takes about 6-8 weeks to begin working. Although the B-cells in my bloodstream are already gone, the auto-antibodies that my immune system made before the treatment are still in my system. Those auto-antibodies are still on the attack, but they should slowly fade and drop off over the next couple months. Once that happens, I should begin to see my pemphigus symptoms improving.

The first week of February, I’ll go back to UNC-CH and have bloodwork done to check auto-antibody levels in my bloodstream. Depending on those results, I’ll learn whether or not I need additional rituximab infusions. I’m going to try and stay hopeful and quietly enjoy the holidays while I wait. Life feels uncertain and open-ended right now.

Living Life When You’re Immune-Compromised

The immune suppression from rituximab is like being put back into your own private COVID lock-down.

If I’m out in public, I choose a quieter time to go out. For example, if I want to choose my own vegetables, I go to the grocery at 7:30 a.m. on a weekday. Usually, I just place a grocery order and do curbside pick-up.

If we want to go out to dinner, we do carry-out or eat at 4:30 and ask for a table away from others. If we want to see a movie, we go a few weeks after opening day and see a morning showing.

Also, I have to wear a mask again. I really hate wearing a mask – it’s so awkward and uncomfortable – but I’ll do what I must. I ordered a bunch of slightly-more-comfortable KN95 masks from WellBefore. They were my favorites to wear during COVID.

There are some things that are completely off-the-table. I talked with my doctor about risk, and came up with a list of things I’m just going to have to live without for the time being.

• Family holiday celebrations – it will be sad to not see my parents and extended family, but prolonged close contact and food-sharing with groups of people is one of the highest risk activities. My husband and I will have quiet holidays at home with just the two of us.
• Working in person – I work in higher-education, specifically in a busy academic building. Student populations are notoriously germy. I’ve had to coordinate an ADA accommodation request with my doctor, my supervisor, and the university’s human resources office. This will allow me to telework during the period of my most severe immune suppression.
• Live sports – We’re huge college basketball fans and have had season tickets for many years. The past few years, we invested in club-level tickets. We had amazing seats, located four rows behind the home bench. The club tickets also meant we had a buffet dinner served in the suite before each game. It crushes me to give all these tickets away to friends, but the environment is just too risky.
• The gym and group yoga classes – I’ve set up my home gym and found a YouTube yoga practice that I enjoy. I will still really miss my weekly Yoga at the Winery class!

The Emotions That Come with Isolation

Most of the time I feel peace and acceptance with my current reality. I am so grateful that treatments exist and that this disease is now survivable! Fifty years ago, it was a death sentence. Knowing that rituximab may give me the gift of full remission makes this sacrifice worth it.

I know that this phase of treatment will ultimately be temporary. Whether that’s one year or five years remains to be seen!

But, I also feel passing bouts of both grief and anger. I feel left out. I feel like life is passing me by. I’m watching my friends gather, plan trips, see their families and live their lives. I feel so jealous! We just got finished with COVID precautions a year or two ago, so it really stings to have to go back into this kind of isolation again.

I also feel a lot of guilt about the expectation of carefulness this places on my husband. He wants to protect me, so he’s wearing a mask and giving up high-risk activities, too. He doesn’t want to get sick and bring germs home to me while I’m unable to mount an immune system defense.

We’ll get through it, but I know it’s going to be hard. I’m trying to accept the feelings that come on both the good days and the bad days. I’m also trying to focus on the gratitude I feel about having the opportunity to heal.