The wild cowgirl awakens, and then comes crashing back to earth

Note: This column describes the author’s own experiences with rituximab and prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Oh, boy, am I tired. So incredibly tired.

A few weeks ago, I received my rituximab infusion to suppress my symptoms of IgG4-related disease (IgG4-RD). I am deeply grateful to the scientists who developed this treatment.

The first few days after the infusion were intense. Before the infusion, I received a dose of prednisone, which turns me into a completely different person. It makes me hyper and I lose my sense of limits, which I’ve never been particularly good at recognizing in the first place. But with prednisone in my system, a kind of wild cowgirl awakens, convinced she can do anything, take on everything, and never stop.

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Ups and downs

Until now. The prednisone hangover has taken over.

After about two weeks, the burst of energy has faded, and what remains is a crushing exhaustion that forces me back to bed. It hits hard because I was already severely fatigued before the infusion. And the rituximab has not fully kicked in yet.

This does something to my mood. I find myself losing courage, and fear starts creeping in. Is it because I have done too much? Or is the rituximab just not working this time? Can I forget about expecting the temporary recovery I’ve become accustomed to?

I remind myself that it has only been a few weeks. The rituximab still has to do its job. In my experience, it takes a month or two to fully feel its effects.

Still, I carry a significant trauma from all those years when I could do nothing except lie around because I did not yet know I had this disease. The fear and uncertainty that I may no longer be granted those few months of functioning is powerful. Will rituximab continue to do its job, or will my disease get worse?

I still have ambitions

I want so badly to live.

I was asked this week if I still have ambitions. I said no, except I want to live to be 95. And to become a grandmother and watch my grandchildren grow up, even though I do not have any yet.

And I want to watch my children build their careers. My daughter graduates this year. She is working as a court clerk and hopes to become a judicial officer. What path will her life take after that? My son is climbing his career ladder one step at a time. His employer recognizes his talent for connecting people and guiding collaboration, and I want to witness it all from the sidelines. I want so desperately to be there.

For years before starting rituximab, I believed that this was all life would ever be. The romantic dreams I once had of traveling with my husband around Europe and North America after our children were grown began to seem impossible, given my lack of energy. I had given up on my dream.

Then rituximab came along, and, suddenly, new possibilities appeared. But for them to be realized, the rituximab has to remain stronger than the IgG4-RD. Living with a chronic illness means living with a fragile, unpredictable future.

Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.