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QD Clinics - Mission: APP Partners in Care Week 1

Dec 07, 2025 1:51 pm
QD300: Flare or Beware (featuring Lindsay Tom, PA-C and Phong Nguyen, MD) QD301: CAR-T Cell Therapy for Lupus (featuring Philip Mease, MD and Cayla Alexander, DNP) QD302: Unweanable PMR (featuring Jack Cush, MD, and Leilani Law, APN) QD303: Weakness with Fibromyalgia (featuring Jack Cush, MD, and Leilani Law, APN)
Transcription
Hello and welcome to QD Clinic. My name is Lindsey Tom. I am a physician assistant at Northern Virginia Center for Arthritis, and I'm here alongside my collaborating physician, Doctor. Nguyen.

Hello, I'm Phong Nguyen. I'm a practicing rheumatologist in Northern Virginia at Northern Virginia Center for Arthritis, and we are here to discuss a case called FLAIR or Beware.

So, this case today it involves a 53 year old male gentleman. Both me and Doctor. Nguyen know him really quite well. We've both been involved in his care and he has really severe psoriatic arthritis mutilans. From the time we met him, he even had chronic deformities at baseline, really severe disease.

And to make it even more challenging, he's actually just, he's not always the most compliant person with his medications. Although I think some of that does stem from that difficulty he's had with getting affordable medication options just due to like high cost, high deductibles, different patient assistant plan follow through. So it's been a little bit challenged historically.

So after a prolonged year, we were finally able to help the patient get on IV galimumab. This is one of the TNF inhibitors, and the response was good from the arthritis perspective. He was showing a very nice improvement with an improvement in joint score and joint swelling, and the skin involvement was quite good with an improved PASI score. He did have throughout the year a few folliculitis issue in his nose, but these were minor and resolved quickly with oral antibiotic using cephalexin without any other complications.

So, you know, on today's talk, we're gonna talk about this time he showed up in the morning, you know, coming in with his psoriatic arthritis flare. This has happened quite a bit. Sometimes he'd get flare ups. First thing in the morning, I walk in, his last dose of IV galimumab was about six weeks prior to this and he was just having really severe pain in his shoulder. It was swollen, it was really warm.

He just didn't look that great and at that point I brought in Doctor. Nguyen as well, to try to figure out a plan of how we were going to tackle this patient.

So upon careful exam, there was a clear shoulder effusion present and aspiration revealed a thick, cloudy, and somewhat purulent looking fluid, strongly suspicious of infection. At this point, we knew he would need more aggressive treatment. We had arranged for him to be seen promptly in the local emergency room for the evaluation of possible further septic arthritis and likely IV antibiotic will be needed. We also contacted our local orthopedics who is a specialist in arthroscopy that could assist us in irrigation and debridement of the joint while he was in the hospital.

So, we reviewed all these records after his hospitalization. As expected, he had septic arthritis. Evaluation of his labs at the time did show that elevated lactic acid, elevated white blood cells, his cultures from his shoulder grew group B strep. He was admitted for several days and once he was discharged, he was sent home on IV antibiotics as well. Later transitioned to oral antibiotics.

And then, of course, in this time, he started to mention how he was still having shoulder pain, but then he continued to have other joint pains that started to recur. His other hands, his ankles, his knees, all of his other arthralgias also started to bother him a lot more.

So the case is about the management of arthritis following aseptic arthritis, which is a complication of TNF inhibitor. We often hear that TNF inhibitors can bring on opportunistic infection, but I want to bring to the point of this recording today that common bacterial infection can occur and can complicate care and can look just like a flare of his disease. So now, about six weeks later with a patient having received a full course of IV antibiotic and subsequent oral antibiotic, his arthritis was active. We feel that he would benefit from low dose maintenance cephalexin therapy as an outpatient, and careful aspiration of the shoulder, again, to document that there's no longer an infection, and this time it proved the case that it was just an inflammatory response due to his arthritis, and the culture remained negative. Ultimately, the patient was allowed to resume his IV glimumab therapy and was kept on low dose cephalexin for the subsequent month as a prophylactic treatment.

And he has done well since.

So that's, you know, how we manage this case. And I think that it was a little bit tricky, but it's a good reminder, you know, that as we had said, not every flare is an inflammatory arthritis flare, especially with those on those immunosuppressive therapy. With flares in the joints, we do need to keep the differential of septic arthritis on our mind. Another reminder, I worked alongside Doctor. Nguyen.

We aspirated his shoulder and it really proved a very valuable tool, especially in this case. So aspiration can be your friend. And in that moment really helped to expedite the way we're able to treat that patient.

So in summary, the risk of opportunistic infection is well documented in literature for TNF inhibitor, which is upregulated in the intestine and skin and joint. And I just want to remind the audience of the risk of common bacterial infection that can occur and can mimic a flare of his disease. And once again, thanks for watching.

Hello, my name is Doctor. Philip Meese. I'm the director of rheumatology research at Providence Swedish Medical Center and conduct a clinical practice at Seattle Rheumatology Associates. I'm honored to be here today, with a nurse practitioner that I work with, Kayla Alexander. And we're going to be, talking about a patient, with lupus who underwent CAR T cell therapy for her disease.

Kayla.

Hello. So today we'll be talking about Sue, a patient at our clinic who underwent CAR T cell therapy for lupus. And Sue is 38 years old from rural California. She was diagnosed with lupus in 2017 with pretty classic symptoms of arthritis, rash, oral ulcers, fatigue, and then had a positive ANA and DNA antibodies. Initially, she was treated just with hydroxychloroquine and prednisone, but several years later in 2021, there was a significant escalation in her disease activity, specifically in regards to kidney involvement.

So at that time, treatment was intensified with combinations of methotrexate, mycophenolate, belimumab, and then after renal biopsy showed class three and five changes, therapy was escalated further with IV cyclophosphamide. And that is when she presented to our clinic with labs at the time showing a UPCR of 1.68, 24 urine protein over 2,200, high titer ANA and DNA antibodies, low complements, and a very high sleet eye score of 26. And interestingly, how she learned about CAR T therapy was actually through a TikTok video that an ER doctor had posted. And she had the industriousness and resourcefulness to figure out how to find doctor Meese two states away and came and presented at our clinic because of this TikTok video she'd seen and what she had subsequently learned about CAR T from her own reading. And the reason she was able to do this to complete CAR T was because of the community around her.

She's a special education teacher and has four of her own children. So her husband and both sets of grandparents who also live in this small town stepped in to take care of the household and the community of her small town and her school came together to cover for her and make sure that she would be able to do this. And it's a lot that's required with the screening and eligibility visits, every in person visit to Seattle requiring flights and hotel stays, and the treatment process itself. Essentially, she had to move to Seattle for almost two months. And after that, visits are required for six months and then visits every three months for two years, and then longer term monitoring for fifteen years.

But her community really rallied around her to support her success, and she was able to complete treatment.

So that was a wonderful summary, Kayla, and exemplified the fact that she had really significantly worsening disease, would have had likely early mortality from, her progressive kidney disease, fact that she had already tried and had inadequate response to a number of different immunomodulatory medications already and now was requiring IV cytotoxin and steroids and so on. So what was the procedure that she went through when coming to Seattle for CAR T therapy? So first of all, there's the screening to make sure that she's an eligible patient and she certainly was. Then we had to schedule an apheresis procedure where we drew off many of her cells and then isolated T lymphocytes, sent them back to the sponsor of the study's manufacturing plant where the cells are engineered to express CD 19 receptor on the cell surface of the T lymphocytes, which would then allow the T lymphocytes when reinfused in the patient to identify, hunt down, and ablate all of the pathogenic CD 19 positive B cells that were present in her. So she went through this apheresis procedure and after a few weeks of the manufacturing where the T lymphocytes are exposed to a lentivirus that leads to a change in the DNA in the cell and then expression of the car car.

The the cells were shipped back to us, and then she was hospitalized to receive three days of a conditioning regimen of cytotoxin and fludarabine. And then she received the cells. She tolerated that very well. The only cytokine release syndrome side effect that she had was two days of fever that received and she was treated for that with Tylenol on the first day and then a single infusion of tocilizumab on the second day. And that was basically it.

There were no other, issues that arose during the two weeks of observational hospitalization that that she had. Then she had to be in our vicinity within an hour's drive for one month after the after the hospitalization. She stayed in a local hotel. Husband would come up or one of her other relatives would come up and be with her. And we saw her frequently during that period and she did very well.

Now we've been observing her out over the course of a year. And what has been remarkable has been the fact that her lupus symptoms have, essentially gone away. Really rare occasion where she has a mouth sore or a little bit of rash, but her kidney disease has really stabilized and improved. Her DNA antibody has gone way down. Her complements have normalized, and she has not had, any adverse effect from the point of view of infection.

She did have a period of low white blood cell count and a lymphocyte dropping that is expected. And now she has been reconstituted with what are called what we would call normal B lymphocytes. And we are hoping for observing a long term remission as has been seen in the pioneering studies that were done by Georg Schetz Group in Erlangen, Germany. But even if there is some recurrence of disease, what we're observing is that it tends to be less severe and more easily treated. And thanks to the significant, supportive community that she had, she was able to, undergo this procedure that is literally, life changing for her.

And it was a delight, to, be able to work with Kayla, over the course of this patient's experience to co manage her together along with our colleagues in the hematology oncology division at Providence Swedish who have had a lot of experience with CAR T cell therapy. And so we're working side by side with them to monitor both safety and efficacy throughout the procedure. So thanks very much, for listening in on this example of a rheumatologist working together with a nurse practitioner and working with CAR T cell therapy and lupus.

Hi, everyone. Welcome to APP QD clinics. These are curbside consults between the advanced practice provider and the rheumatologist about cases that we co manage. Today, I'm joined by a longtime colleague and best friend, Leilani Law. So I'm Jack Cush in Dallas, Texas.

Leilani?

I'm Leilani Law. I'm from Dallas, Texas.

Okay. So the good news is that we've done this a lot. Meaning, we've worked together since I think it was 1993. So over thirty years, Leilani and I have worked together and and she's taught me a tremendous amount about how to manage patients. And together, we've seen some great patients.

And what we're gonna do is kinda do what we do normally, which is we ask questions about patients we share, we update each other. And then when we get to a head scratcher, we do these curbside consults on what to do. So Leilani, recently asked me about a patient that I label this as unweanable polymyalgia rheumatica, question mark. So Leilani, I'm gonna, sort of summarize, what we had talked about, and then I'm gonna ask you some questions. So this was a 70 year old white guy who was diagnosed by the primary care doctor maybe eight or nine years ago.

He had shoulder and hip stiffness and pain. I assume his labs were in in the PMR range. He also had some peripheral joint symptoms. Because of that, he was started on p on prednisone and was sent at some point to a rheumatologist. And and he stayed on that for a while.

The chronology here isn't so important because we're talking about what happened almost nine years down the road as opposed to what happened in the first two years. So anyway, he started on 20. He was weaned down to ten. And when he was flare when he flared when they tried to get lower, he was started on methotrexate as a steroid sparing drug. So again, you're still not seeing this patient.

Right, Leilani? No. But going forward, they couldn't use methotrexate in him because why?

He's had worsening CKD.

Okay. So they did try to get him down on on all these drugs. And and actually, the rheumatologist did get him off methotrexate and because of the CKD. But also oh, did get him off prednisone, and he was off of prednisone, off of methotrexate. How long do you think it was, Leilani, that he was off those medicines?

It was about a year.

Okay. So the thinking was he I guess he was in in remission and and that was all good, but then things got worse. He flared with pain, but now it wasn't girdle, you know, shoulder, hip, stiffness. It was like peripheral arthritis in his hands, fingers, and knees, and his CRP went up, and his right knee got swollen.

It was just the left knee.

Oh, it was the left knee. Yeah.

Yeah. And it was mostly just the PIPs.

Mhmm.

And, the CRP got as high as ninety nine point eight milligram per liter, and decidrate got as high as 66.

So this is you could see I I see where this getting getting difficult because he's got PMR like labs, but he's got peripheral joints without without that that girdle stuff going on.

Mhmm.

So this is confusing to you, and then you find out what's the story with psoriasis?

I just started kinda going through all the review system just to kinda start all over again, just to make sure we're not missing anything. And I just happened to ask, do you happen to have any rashes? And he said, well, I did get diagnosed with scalp psoriasis by my dermatologist.

Wow. And here he is with PIPs and knees. Were his fingers swollen at all? Did he have other signs of psoriasis?

Just the scalp. Nothing in the elbows or belly button cracked up his butt, and, he it's well controlled with just the shampoo. And I didn't see any overt synovitis at the PIPs, but I thought maybe there could be subclinical synovitis, I'm not able to pick up on palpation. The left knee, tried to do, I did do the joint aspiration, but the synovial fluid analysis was negative. As far as for inflammatory cell count, there was no crystals.

I did give him an injection and it's helped and it hasn't recurred.

Okay, so that's behaving, the fluid was non inflammatory by cell count, but does he still at this point still have elevated CRP and sed rate?

Well, because he was having quite a bit of pain with his PIPs, and it took a while for the injection to take effect, I put him back on prednisone, up to, 15, now he's down to 10, his CRP is down to 5.5 and the ESR is down to 14. His x rays of his hands and knees is basically OA changes.

Okay, so the question is, is this PMR, Is this a new arthropathy either inflammatory or non inflammatory that came on because of his age or whatever? And then he also has monoclonal gammopathy of unknown significance. You know, how many things you're going to have that are going to confuse you as to the etiology, you know, going forward. So again, I would say this guy, when you laid this out to me, this was a clear cut case of PMR. And that and he went through all that.

He went through a few years. We always tell our patients, you know, you're gonna be on prednisone for, you know, eight months to two years and in fact, they're on steroids for five years because we're in either it's hard to get out of steroids, the patient doesn't wanna get off, you're not good at weaning off, whatever. But I think he had a PMR era. And now the question is what era is he in now? Is it a PMR or is it an OA or PSA kind of thing?

So what what most concerns you about his management now?

As far as what treatment options besides steroid can I offer him? If by chance this is not PMR anymore and it's kind of morphed into spondyloarthropathy? Or I did test him for rheumatoid factor and CCP, both were negative, but could this be late onset RA?

And seronegative. Right. Well, again, if we but that's gonna be, I think, you know, the here's my bottom line on this, and I think it's it's a bit of a cop out, but I think it's smart in and and pragmatic in that it's a little bit like overlap disease. You know, they got a little bit of, systemic sclerosis and some rheumatoid, and or they got lupus feets lupus with rheumatoid features and we call it RUPES. And, you know, and then we wanna know how to treat people who seem to have, you know, that are not from the textbook.

And the bottom line is you treat what they got. Meaning, if he has, you know, as you did, a swollen knee, aspirate it, inject it, and then see what happens. If he gets flares when you wean his steroids, it's gonna be an inflammatory o a, inflammatory PSA, or it's gonna be PMR with peripheral peripheral joints with with a strange presentation, just treat what he's got. But, you know and do it always in a in a least risk, adverse manner. I think that that's kind of the way to go.

I just think it's wise to consider a new diagnosis. And you did imaging, right?

Just the x rays. Was thinking that the next time I told him to continue to taper the prednisone, one milligram every two to four weeks as tolerated. And then as he flare, I was thinking, and if he still doesn't have a BERT synovitis, I was considering an ultrasound to see if there's any subclinical synovitis that might get picked up.

Yeah, and also ultrasound being used as a diagnostic criteria for PMR in the shoulder and if not the hip, that I think is smart, smart way to go. Let's just go back a little bit to steroids. What is your what what do you do with a new PMR? You know, an 82 year old Caucasian woman comes in and she can't move, like, she was good six months ago, now all of sudden she's got bad stiffness. And, you know, you find the sed rate to be 82 and the CRP to be, you know, 10, some crazy number.

What's your I what's your starting dose of steroids?

If somebody has diabetes, I tend to go 10 to see if that's enough to control the symptoms. If not, if there's no diabetes and it's still not helping significantly, I may try fifteen.

Yeah. And then the only other caveat I think, and I like that approach. That's, and I don't think I think about that often enough, like the comorbidities that are dictating what the dose could be. The other thing is how bad do they need to be great? You know, you know, are they going to their their grandson's wedding, you know, next weekend, or, you know, is their job and income based on it?

Then I might start at 20. Right? Just because I need to get them better and there's no contraindications, but I think your dosing is the same. And then when do you want to start to wean? How many

Usually in four weeks, like to see them and see how they're doing and repeat their inflammation markers. If they're significantly better and that is also reflected by the lab, I start to wean down.

So and going slow, obviously. Right? One milligram at a time if they're at ten, you know, maybe two point five if they're at fifteen. You know, I I used to do start weaning at eight weeks with people. I think I've gotten and I think it's I'm trying to be intelligent about this.

I kinda wait until three or four months before I take them down from the dose that's working because I do wanna get to that being off the steroids in, you know, eight to twelve months. And and I still think even though I worry about it, I don't get there often enough. And, there's a good video on RheumNow from Richard Conway from, Dublin, Ireland where he talks about, basically, he changes whatever it's gonna be. Five milligrams, two point five milligrams, one milligram. He changes, by month.

And and he warns them the first week might be rough, You know? And that's to to tell him about the steroid withdrawal. So what happens when you get Leilani to they're at ten, and you can't go below ten because when you go from ten to seven point five, they they flare. They tell you they always flare and and they self medicate themselves back up to fifteen, and you're playing that dose. And you're now worried that the flares aren't flares because the sed rate's normal and the CRP's normal, but it's like steroid withdrawal symptoms.

How do you get below 10 when you're dealing with steroid withdrawal?

A lot of just education on how to treat the steroid withdrawal symptoms that reassure them that their labs are normal, but we just need to have the body adjust to the slow titration. They could take something as simple as Tylenol arthritis, two tablets twice a day. And if not better, we can try other options as well. But I think just reassuring the patients that, hey, your labs are normal and we just need to wait it out usually a couple of weeks and they're able to just take some Tylenol arthritis.

And then I make it really complicated. I think these are all like reassurance and giving them a lifeline, the acetaminophen and the labs being normal, but I still think they're freaking out that they're going off the steroid. And that's when I do that sawtooth thing, I'll say, okay, let's go down one milligram to nine milligrams for, one day and ten milligrams, and you sawtooth nine, ten, nine, ten, nine, ten for seven to ten days, and prove to them that you can get to nine and there's no difference between nine and ten, and then they stay at nine. And then you repeat it all over again, maybe all the way down to one and but sometimes it takes that long. So so at this point, if you had to bet we're going to Vegas this weekend, Leilani.

What's your bet? What are you putting your chips on? OA, PSA, or PMR that you're gonna be managing this this man long term?

Given that the high inflammation markers, I think it's not just OA. I mean, by X-ray he has OA, but it's hard to argue it's not inflammatory because of the high ESR and CRP. So it's either psoriatic arthritis or PMR, Could you have both?

You can, but it's I've never seen it and I my I did a literature search on it. It it's it's rare, rare, rare, rare, rare. I think it's a much more reasonable thing to expect that, you know, a 70 or 80 year old man is allowed to get OA or is allowed to get in, you know, PSA, you know, after he had PMR. But, you know, it is that old dictum that why give them two or three diagnoses when one is gonna work. Right?

You know, you you know you know, you see people come in and they say, I have rheumatoid gout, lupus, and scleroderma, you know, and and you know they're not gonna have all of them. And they just basically been misdiagnosed, but there is one always one unifying diagnosis. And time is gonna be your answer. I think what you said is true. If if the inflammatory markers when you're weaning go back up, then you you are dealing with an inflammatory process.

And then you gotta decide whether you're gonna use steroids bearing therapy for PMR or steroids bearing therapy for PSA. So when will you use I mean, the steroid sparing therapies for PMR are basically when you can't get off of steroids and you but you gotta pick a time. You gotta pick, like, what's your date? Is it eight months, one year? Often, most people are going on PMR steroid sparing are going on many years into the story and that's not the right way to do it.

So and obviously, ceruleumumab, the IL six inhibitor is FDA approved. We've got the great data with upadacitinib. Well, actually, that's for GCA. So that's not actually proof of PMR, but it's gonna work there. And there's a lot of data about JAK inhibitors being effective and there are a few JAK inhibitors that are now doing trials to get approval for PMR.

But I would use a JAK inhibitor. The data on methotrexate is very dicey. And yes, you're gonna use methotrexate because it's the drug we know, it sometimes works, but most of the studies are equivocal on methotrexate and other DMARDs definitely not proven to work like hydroxychloroquine or leflinamide or azathioprine or mycophenolate. I wouldn't I wouldn't go there. I'd go from methotrexate to an IL six to maybe a JAK if I got into trouble down the line.

And then if this is PSA, you're gonna treat it with the many options that you have there. What's the one last question you might have on this?

Would you think advanced imaging can help differentiate what we're dealing with here?

So beyond ultrasound and x-ray, there is data about PMR and certainly the utility of ultrasound and maybe even PET scans. Right? But seems like a whole lot of money to spend on what seems to be a pretty pedestrian problem to manage. I don't think I'm gonna you know, and and you know me, I'm not a big believer in ordering MRIs and RA patients or PSA patients. I I don't do that unless it's in a clinical trial because I trust my exam and I trust the labs and I trust what the patient tells me.

And we do know that advanced imaging, a, is hard to get, b, expensive, and sometimes it's fraught with abnormalities that are not pathogenic. Right? We know that all the studies about, MRs of the pelvis and SI joint abnormalities that are seen in, you know, hockey players, pregnant women, and people who are janitors. And they have no history of spondylitis. So you gotta be you know, know that there is a limitation even to MR or expensive imaging.

So I think with trepidation, I would, you know, I would think about it for a while and I like to use imaging to help me make up my mind. If I can't make up my mind, then I'll I'll go further on imaging. Maybe that's the wisest thing I can say at this point. Anyway, a great case, Leoni. Thanks so much.

Thanks all of you for tuning in. There'll be more APP QD clinics, curbside consults. Tune in. Thank you.

Thank you. Bye.

Hello, everyone. Welcome to QD clinic, APP QD clinic. We're back again. I'm Jack Cush in Dallas, Texas. Leilani?

I'm Leilani from Dallas, Texas.

Yep. And Leilani and I are an unbeatable duo tackle all the difficult questions in rheumatology care. I wanna present a case to Leilani. A 41 year old woman comes to see me referred by both neurology and another rheumatologist for weakness. She has a history of anxiety, depression, insomnia, and ADHD.

She was seen by these other doctors who found an a ALT of a 100 and an AST of 95. Her aldolase was elevated at 20, but her CPK was normal. She has you know, she says she's weak. She falls. She drops things.

She but she can rise normally. She can climb stairs. She can comb her hair. But she says she always feels weak, and she also also has a lot of fatigue. She had a big lab workup.

As I said, the c CK was normal, but the aldolase was elevated. But negative tests for rheumatoid factor, CCP, ANA, SSA, ENA, double stranded DNA, complements, RPR, all that. Her big thing is weakness. She does have pains in her neck, shoulders, back. She does have stiffness.

She does get numbness. She has a history, as I said, of anxiety, depression, and insomnia. She's on Klonopin at bedtime, and she's on Ambien at bedtime. And she takes an antidepressant, and she's on ADHD medicines, Adderall. So the question and then when I ask her, you know, she she's married, has kids, has a job, but she smokes two packs a day, and she drinks every day.

And she says, yes, I have an alcohol problem. She's had hepatomegaly. She has had not had a liver biopsy, but she's been seen by a hepatologist and told that she has a liver disease that is going to kill her unless she stops. And she still is drinking and smoking. So she's coming to me for weakness.

When I examine her, her joints are all normal. Four tender joints, no swollen joints. Her CDAI score was 25 because her pain was high. Her HAC score was high. But again, she has very few tender joints.

She had six out of 18 tender points, kind of asymmetric, but on both sides, upper and lower and around the spine. And so I think she's got, you know, some degree of fibromyalgia that and and she's got a sleep disorder. Never had a sleep study. No. She did have a sleep study, but she doesn't know what the results were, and they didn't put her on CPAP.

So but she tells her her sleep is not good. She falls asleep good with the medicines. She wakes up multiple times because of pain and to go to the bathroom, but she wakes up feeling, you know, crappy, you know, no energy, you know, the mornings are hard for her and that kind of thing. So the question I think I have as far as, you know, how would you or would you be comfortable with this being a diagnosis of FM even though a, she doesn't have, you know, all the tender points. She's only has six or seven.

And b, she's never been diagnosed. And then she her main complaint is weakness. Would you be okay with a diagnosis of fibromyalgia?

She is partially treated fibromyalgia because she's already on Ambien and medication for sleep and Klonopin to help with the anxiety. She's already on antidepressant, which are all part of the treatment for fibromyalgia as well. I would be comfortable with a partially treated fibromyalgia diagnosis. So, but the triple digit liver enzymes, is that something new with the alcoholism, or is it bad is it worse from before?

No. It looks like it's I I looked at a bunch of notes, and it looks like she's had that for more than a few years. And she's been told by other doctors that she needs to address that because it's a big problem, but she's trying not to. And the reason and the reason she is, you know, seeing all these doctors is because she doesn't want to have that to be her problem. She wants to have, you know, a a rheumatic problem or a neurologic problem that can be treated that will make her feel better.

And and I and I told her, no, your weakness, your pains, your low back pain, your itching, your crummy sleep, your fatigue, you know, your your not not itching, numbness. You know, all those can are due to poor sleep and fibromyalgia. And, yeah, your sleep is she says her sleep is good, but then when you ask her nine questions about sleep, it's, yeah, but and then she goes into a long description as to what her night is like. You know? And so she's already on sleep medicines.

And I I I like that because I don't have to do anymore. I just have to refer her to a sleep expert and tell her how important sleep is. You know, that I mean, that's something that we've done a long time. You know, the question is how comfortable are we as, rheumatic health care providers comfortable in addressing sleep. So you see it all the time because we stressed it all the time in our evaluations.

How far will you go? You you find someone who's got a sleep problem, you think the sleep problem is worsening their symptoms, either worsening their arthritis or giving them myofascial pain or fibromyalgia, what will you do for their sleep?

If they give me a long history of chronic sleep disorder, I'm not sure if I can offer anything that's the typical sleep aid that we usually give would really help them. They may need combination, sleep aids and probably the newer agent sleep aids that I don't feel comfortable prescribing. So I'll probably go right straight to a sleep specialist who can better treat it than I can.

If I were No, we're no longer practicing together, but you know, I did consider for a long time that we see so much sleep problems that we should be doing sleep studies in our clinic to tell it to prove to the patient that you do have a sleep problem here. You know, as far as we go is say, you know, get yourself an Apple watch or a Samsung watch or or a cheap, you know, Fitbit like watch like this that my and and look at how bad your sleep scores are. And I think that those are things that you can do. But I I agree getting the sleep expert involved. And the other thing about this patient, her problem is weakness when she's not weak.

So there's not a lot that we can offer this person. Can you think of something else that I haven't thought of as far as her evaluation? I guess she's had an extensive lab including endocrine, autoimmune, neurologic antibodies, myasthenia gravis antibodies. EMG was normal. She had a little bit of my no, the nerve conduction was normal.

What else could I do for her weakness that she's coming to me for?

And she's not weak on exam?

No. No. She's five out of five. You know, her grip was good. You know, she could jump up and down a few times with no rocking or no Gower sign.

You know, I I I basically told her, if I treat your sleep better and and and tell you it's fibromyalgia, I think if you fix those things, then your your weakness and fatigue and fog are gonna get better is the way I sort of approach the problem. And the hard thing really wasn't convincing her that her liver enzymes and her aldolase were from liver and not muscle. But I don't know that for certain. And the only way I'm gonna know that is by doing a liver biopsy. Mhmm.

Which, you know, I'm sorry. By doing well, you could do a liver biopsy or you could do a muscle biopsy. Mhmm. And the question is where's the money? Do you which would which would you do?

Again, aldolase twenty, CPK normal, AST ALT a 100, normal belly, normal I didn't do GGTP. Normal belly and normal albumin. Would you do a liver or a muscle? You know, I don't know. Would you have I don't have a strong feeling here.

I guess before even doing a biopsy, the MRI can guide you where to get the biopsy from.

Yep. Mhmm.

And and that yeah. We talked about that. The question is, if you get an MRI, what's the cost of an MRI? And this is a this is a person who doesn't have insurance. Cost of an MRI is gonna be, I'm gonna say, 1,000 to $1,500.

Whole body MRI could be like 4 or 5,000. Right? So what do you I mean, I'd like to get a whole body on MRI in this person, but you didn't have the money. How much is a would be a muscle biopsy or a liver biopsy? That's gonna be, you know, 1,000 for the consult and whatever it does takes to get to the procedure.

And procedure is gonna be 2 or 3,000. You know, it's a it's a money issue at some point. So but the I think the patient has to and and that's what's good about this case. The patient's gonna have to say, yes, I'm willing to spend the money on that if that's what you think is best. She tried

and failed physical therapy already?

Yes. Yes. And she said that she goes, it doesn't do her any good. She says she feels better after physical therapy, but then she goes home and falls down or her husband says that she can't get out of bed because her legs don't work, that sort of thing. So anyway, this is I like these kind of cases because they're very real.

They're not textbook. They're always not something that we can fix. I think, you know, the rheumatologist role, you know, the APP's role is to identify the all the contributors to to bad sleep, including in her ADHD drugs.

Mhmm. Right? Yeah.

And and alcohol use. The two worst drugs in the world, if you got a sleep problem. So she's got she's driving her sleep problem with drugs, and then she's fixing her sleep problem with drugs. This is not a good recipe. So yeah.

Good good luck with her.

Well, I think going back to psychiatry to better manage sleep medicines and to get her off the ADHD drugs and to see the liver doctor, go back to the neurologist, fix the sleep as best we can by seeing a sleep doctor. I didn't I didn't do much in the way of of treatment. I can't give her Tylenol because of her liver problems. And and I'm telling her to limit any use of nonsteroidals.

Mhmm.

Alright. I think I know where I'm going on this. Thanks, Delaney.

You're welcome.

Alright.

Thank you.

Bye, everyone.

Bye.

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