Jessica Walsh, MD, on Medication Wear-Off in AxSpA: Part 2

In part 2 of this podcast, Dr Walsh continues discussion of her research into patient perspectives and medication efficacy in axial spondyloarthritis — including a few surprising results.

Jessica Walsh, MD, is an associate professor of rheumatology at the University of Utah and section chief of rheumatology at the Salt Lake City Veterans Administration Medical Center. She is also a medical advisor to CreakyJoints.

Listen to part 1 of this podcast here.

TRANSCRIPT:

Rebecca Mashaw:

Welcome to Part Two of this podcast from the Rheumatology and Arthritis Learning Network with Dr. Jessica Walsh, about her study into the wear off of medications for the treatment of axial spondyloarthritis. One of the more surprising findings, at least to me, maybe to you, was that the majority of these patients, despite those poor scores and having poor control of disease, and these reports of medication wear off, expressed satisfaction with their treatment. How do you account for that?

Dr. Jessica Walsh:

That was interesting. The first time I saw those data I went back and said, "Is this right?" I think there's multiple factors going on, and one is that there's ... I suspect that the starting point for a lot of patients who reported that their disease, but they're satisfied with their treatment, but we really didn't have great disease control may have started at a point that was quite a bit worse than where they were when they answered the question. So they experienced enough improvement to say, hey, I'm happy that I have this medication. I'm satisfied with that. And in a way it may be that the expectations just are not high enough, at least in my opinion. We shouldn't be shooting for a target with that high of a disease activity, so that may be part of it.

Dr. Jessica Walsh:

Another aspect that may be affecting some of the patients who responded to these questionnaires is that sometimes it gets tricky to separate pain and symptoms that are directly caused by the inflammatory processes of axial spondyloarthritis versus other types of pain. For example, if somebody needs a back surgery because they have degenerative disc disease or some other process, the pain from those diseases may be reflected in their disease activity scores. And yet the patient may recognize that, that is a separate process and they're not considering, or they're excluding that part their symptomatology from their satisfaction assessment with the medication. I hope that makes sense. But it's a good question. And the ultimate answer is we don't know. But I suspect there's multiple things playing into that for various patients.

Rebecca Mashaw:

Are there markers that you look for that tell you about disease activity, but that are not necessarily reflected in patient symptoms, as with some other diseases?

Dr. Jessica Walsh:

Yeah.

Rebecca Mashaw:

In terms of inflammation, but their function is okay and their pain is less, so they're not really factoring that into their level of satisfaction.

Dr. Jessica Walsh:

Yes. And unfortunately, this particular disease is ... We don't have a lot of what we call biomarkers or objective things that we can see on labs or x-rays or on exam. But there are a few things that I occasionally will say, wow, you say you're doing great, but I'm looking at this and it doesn't look great to me. And those things sometimes are inflammatory markers from blood labs. And other times we can look at images, ultrasound, MRI, sometimes even x-ray and say, gosh, there's a lot going on inside this joint here, a lot of inflammation or damage from previous inflammation. I'm surprised that you're reporting that you feel well because in most people, I suspect this would be very painful. So, we do see that discordance with what we see on some of our tests and what patients report. And I suspect that happens even more than we know, just because well, we're not always very well able to assess what's going on internally.

Rebecca Mashaw:

Do you check certain inflammatory viral markers like C-reactive protein with these patients?

Dr. Jessica Walsh:

I do with the realization that there's some limitations, so some people can have active disease and their C-reactive proteins are normal or close to normal. Other patients, their C-reactive proteins are a better marker of what's going on than with their disease, so they correlate a little bit better with their symptoms. So, they can be useful, but I hate to hang our hat on that, just because I don't want to miss or under address or under treat active disease with a negative marker. And the flip side of that can happen too. So these inflammatory markers are not specific to inflammation from axial spondyloarthritis. For example, if somebody has an infection or something else going on, their CRPs can go up. So we have to be careful not to overreact to an inflammatory marker if we're not fairly confident that it's specifically, or there's nothing else going on that would've caused it.

Rebecca Mashaw:

Because it's not specific to axSpA.

Dr. Jessica Walsh:

Yeah, it can be from other things.

Rebecca Mashaw:

So do you have any last thoughts for your colleagues in rheumatology out there who might be listening, who would like to know what do I need to do to help my patients? And how can I apply this information when it comes to things like choosing medication, choosing dosing regimens and working with my patients about their perceptions?

Dr. Jessica Walsh:

Yes. So, I mean, another big piece of this that to me was impressive, is that when people, when patients were experienced wear off, they're oftentimes reaching for other medications. So 37% said, hey, I use an opioid in that time where I'm experienced wear off. 42% went for a muscle relaxer. I think it was about 20% who looked for alcohol or other substances to help with their pain. So that's a really big deal, because that's telling us that medically we're not offering patients the options they need to manage that period.

Dr. Jessica Walsh:

So it's important for us to keep trying to address and understand this issue and something that I'm quite interested in and doing this is working with collaborators to say, okay, we're recognizing that this is a big problem. Let's see what happens when we try other dosing options. So we need to study it. So if somebody's medication effect is wearing off after 12 days and it's a 14 day medication, what happens if we give them a dose early? Or what happens if we use the same total dose, but we split it into two doses? So instead of full dose every two weeks, we do half dose every week. Or I mean, there's lots of different options like that we can look at to see, does this actually solve the issue of wear off.

Rebecca Mashaw:

And you don't want those patients self-medicating so ...

Dr. Jessica Walsh:

We don't want them self-medicating. And interestingly, a lot of patients actually do some of these experiments themselves and they'll come back and say, I started taking my medication every 11 days instead of every 14 days. And oh, by the way, doc, I'm out, can you give me some samples. But I really like doing it that way. Or sometimes people do it the opposite way too and say, hey, I spread out my dose a little bit. Because I don't think I need it quite as often. And so there's a lot of individual experiments occurring and some good feedback on that. And I'd like to see some formalized studies that are well designed to look at some of these different options for dosing flexibility.

Rebecca Mashaw:

But there's also the potential for danger there if you've got patients who are mixing in opioids and alcohol to try to help them make it through that gap between when the medication stops working and when they get their next dose.

Dr. Jessica Walsh:

Absolutely. Yeah, it is a risky situation. And I also want to say, I don't really advise patients to be experimenting with their dosing schedules, with their biologics either. But yeah, both of those, there's a lot of risk to self-treating with various supplementary medications or alcohol. And also kind of managing your own dosing schedules you see appropriate because we have to have ... It's really important to think about the safety of that and have some discussions about what's known and what's not known.

Rebecca Mashaw:

So is this something that rheumatologists should be making a habit out of discussing with their patients : Are you feeling this wear off? Are you needing even over the counter NSAIDs to get you through the gap?

Dr. Jessica Walsh:

Absolutely. Yeah, I think although our tools, we don't have an expansive list of tools to use to help people with this, with these gaps, there are some things that the providers can prescribe or otherwise help recommend for the patients to help manage those symptoms. And some of them are going to be safer and more effective than others. So I think those are very important discussions to have.

Rebecca Mashaw:

Do you have specific things that you turn to for your patients in those circumstances?

Dr. Jessica Walsh:

Yeah, a couple of examples. So nonsteroidal anti-inflammatories are kind of a key cornerstone medication and oftentimes they don't work well enough by themselves. And so people often will use a biologic. And a lot of times people will get on a biologic and say, I don't need my ibuprofen anymore. I feel well enough without it. Or they'll say I don't need my ibuprofen except for the three days before my next dose. And then there's this catch up game. So three days before my next dose, I feel pretty bad. And then I remember my NSAID the day before and I feel a little better, so just trying to actually kind of schedule. Like, here's a good time to take your, your NSAID every time, just take it for these last three days before your next dose.

And then you don't have to worry about the catch up or losing a day or two due to uncontrolled symptoms. So that's just an example of one thing. Physical therapy or exercise can often help quite a bit. And sometimes people will say, gosh, it's the day before my dose. I know this is the day I just got to get up and do my stretching. I'm not even going to think about it. Just get out of bed and put on my sneakers. So that's another approach that some people like and there's other techniques.

Rebecca Mashaw:

Okay. Well, thank you very much for joining us to talk about this. It's been very interesting and we'll look forward to seeing what further research uncovers on this topic. Thanks.

Dr. Jessica Walsh:

You as well, thank you.