Challenges in C3GN Care: Managing Relapsing and Treatment-Resistant Disease

Announcer Introduction: 
Welcome to On the Frontlines of C3G on ReachMD. On this episode, we’ll hear from Dr. Gates Colbert, who’s an Assistant Clinical Professor at Texas A&M College of Medicine and a practicing physician with the Kidney and Hypertension Associates of Dallas, located at Baylor University Medical Center in Texas. He’ll be discussing challenges in caring for patients with C3 glomerulonephritis. Here’s Dr. Colbert now.

Dr. Colbert:
Unfortunately, we have a lot of challenges when we’re treating patients who have C3GN that is constantly relapsing or can be treatment resistant. Number one: usually, these patients have had a problem that has been escalating for months and even years, and so we’ve been trying to manage expectations during that time period. And when a patient is slowly worsening, that can be very challenging and concerning for patients because the treatment plan that they’re on is not solving their problem. So we first have to battle that perception of the patient that things are worsening and counsel them that we have a plan—that we are trying to attack this and control it as best as possible.

Then we have to move into what medications we are going to use. So we’re going to be using steroids—potentially at escalating doses—as a patient is getting worse. We may have to start patients on higher doses than they’ve been on in the past or high steroid doses that they previously have had a bad reaction to or a side effect profile that they didn’t appreciate and didn’t do well with. And we have to escalate their immunosuppressive medications, such as MMF and other immunosuppressive agents, and so that can create its own challenges of decreasing their immune system and increasing risk for other common and nosocomial infections and potential side effect profile as well.

The burden of C3GN on patients, unfortunately, can be extremely large. First, this is a difficult disease to describe and can be a difficult disease to comprehend, especially if you don’t have a lot of health literacy. Even if you do understand the disease process, trying to understand why your disease is getting worse at this point versus when it was better in the past is also difficult to understand, even from a well-informed clinician or researcher in this space.

And then, in terms of the long-term treatment decisions, that is going to be something we have to have with our patients as an individual basis. So we have to allow the patient to have some ownership of their treatment plan because we don’t have a perfect algorithm and we don’t have a cure for this disease, unfortunately. We have to include our patients in what medications are offered and what we think they will benefit from the most based on where they are at that time. So we have to lay out the data and the choices of medications and look to our guidelines and say, “Well, this is what’s recommended based on where you are right now; do we want to implement those, or should we augment them because of previous experience, whether positive or negative?” And so, unfortunately, this is a difficult  treatment algorithm and decision tree that both the clinician and the patient are having to make together for a disease that has no cure.

And so all of this has a big impact on quality of life because, as we’re escalating medications, adding to their pill burden, or potentially setting them up for an IV infusion therapy, this has a huge impact on the lifestyle that they will lead. They may have to change their exposures because they have a decreased immune system. They may have new side effects from medications that they now have to work around, whether it’s increased fatigue or increased problems with insomnia or tachycardia because they’re on higher doses of steroids. So, definitely, with each medication that we’re adding on, there can be a change in their quality of life, and so we just need to set good expectations for that as the treating clinicians, but also gather feedback from our patients on a timeline basis to determine how their experience is going with being on these medicines. We can show them the data from their lab work, that we’re showing improvement or at least calming the disease as best as possible, and then pivot as those things change throughout time.

Announcer Close:
That was Dr. Gates Colbert talking about challenges in managing C3 glomerulonephritis. To access this and other episodes in our series, visit On the Frontlines of C3G on ReachMD.com, where you can Be Part of the Knowledge. Thanks for listening!