Back, sortof

My mother, who’s a bit shy of 84, lives with us here in Ann Arbor. She moved in permanently about three years ago, and has been doing fine. She treats living with us as if it were “a nice vacation”, and rates the simplicity and repetitiveness of her days here pretty highly. We consider it a boon and blessing not to have nursing homes involved; none of us (my wife, my mother, or I) have had good experiences with the quality of work in any “extenuated care facility” we’ve ever visited or used.

Nursing homes suck. So our plan is take care of my Mom for the rest of her life. That’s been the explicit goal for quite a while.

Like a lot of folks in my family, arthritis and rheumatological problems are generally her biggest challenges. Along with the requisite osteoarthritis stuff, she suffers from a surprisingly common complaint called polymyalgia rheumatica (PMR). PMR is one of those diagnoses that comes just before a shrug: its symptoms are much like those of rheumatoid arthritis, except it doesn’t have any joint swelling or skin issues; its symptoms often include a weird temporal artery inflammation and headaches, except for the 30% of patients that don’t have that; it’s fatiguing like the even-weirder and controversial “fibromyalgia”, except that it’s a definite syndrome with a much more limited symptom list. Including one cincher, a sure-thing diagnostic marker.

“Diagnostic” should be scare-quoted, I think. So in PMR, you hurt in your large muscles, symmetrically. Arms, legs. [Mom: Check] Sometimes you get temporal arteritis, but not always. [Nope; leave box blank] You have fatigue, sometimes overwhelming. [Check] Your blood tests show sky-high inflammation measures. [Check] And the clincher: your symptoms improve with low-dose prednisone. [Check]

Basically you have PMR if you feel better when you take prednisone, the broad-action corticosteroid. Thus the scare-quotes. Diagnosis-by-treatment doesn’t seem to be very clear-cut for me.

Indeed, this last couple of weeks we got that pointed out.

Not to call it into question. My Mom’s PMR diagnosis is very sound. She’s had a few flare-ups of symptoms through the last six or seven years, and a bit of extra prednisone has always seemed to clear them up. Her old rheumatologist in Cleveland seems to have (a) figured he’d try some ad hoc off-label trials, and (b) owned a profitable lab, so he tried her on some monoclonal antibodies that are specific to rheumatoid arthritis, and there was no effect on my Mom (she kept commenting on how many times the other folks in the injection room said they felt immensely better, and in six months she was kinda “eh” at best). And so she’s been taking 5–10 mg prednisone daily for about six years.

Now prednisone is one of those systemic blunt instruments your doctor will want to try to wean you off of as soon as possible. Like all corticosteroids, it wanders around in your body like a family renting your house: doing a little painting here, making a bit of a change there, taking a few doors off their hinges, and letting the window blinds go to hell… and maybe it won’t weed the garden or might let its dogs shit in the basement or its kids will draw on the walls… and, sometimes, you know, kindof knocking a few holes in the walls. What the hell; it’s not prednisone’s house. All that crap’s your responsibility.

Not a good tenant. Kindof slapdash and hyperactive. Because, see, it’s a _cortico_steroid—it mimics and masks a lot of the effects normally handled by your more professional sort of steroid hormones, like adrenaline and cortisol and stuff.

So when you apply prednisone for clinical goals like “reducing inflammation” it can keep stuff like fevers and other obvious disease responses masked and hidden. Lose those early-stage warnings, like “not feeling well”, and all of a sudden you’ll find that Bad Things have crept up on you. Bacterial and fungal infections, for example. And cancer. You know—all that “little stuff” your body uses innate inflammatory responses to fight off. Nearly everything that presents with “flu-like symptoms”, say—which if you look over the lists is essentially every goddamned thing that can possibly go wrong up until the point where you start leaking or falling down.

Plus (there is a “plus”), prednisone weakens connective tissue. You will tend to bruise easily (like when you wear your watch too tight, or have a button in the wrong place). Your nails and hair get a bit softer and more pliable. And your intestinal walls and all kinds of other tubes here and there get a bit weaker.

Oh, and you can’t just stop taking prednisone. That’ll just outright kill you, often as not.

There’s the rub. You start, and it works, but then need to wean yourself.

So basically back in May my Mom was doing pretty well, running on about 10 mg prednisone daily. Along with her rheumatologist, we wanted to try the standard drill (have tried it lots of times now) of dropping her dose one mg a month, just to see how far towards the ideal 0 mg/day we could get.

Down around 8mg/day, she started having familiar troubles. Fatigue (two, three naps a day, awake and perky maybe 6 hours); muscle aches; loss of appetite and early satiety. We thought that last was from her NSAIDS, so we ramped up her Nexium dose a bit.

And yet it got worse. So I popped it back up to 10 mg/day, where we had started… and she stayed worse.

By early July, when we went back to the rheumatologist, she was in pretty bad shape. All her polymyalgia symptoms were in full bloom, plus a few more. And when we weighed her, she was down 20 pounds. Not good.

Rheumatologist (a smart lady) scheduled an emergency CT-scan. On spec. Well, no, not “on spec”—it’s a good thing, with an older patient, to just sortof look for something happening when there are unexpected weight loss things and pain things and inflammatory things. Those are good indicators of malignancy and infection, as a rule. So you do a CT scan from head to hips, and just see what’s out of place.

So about two weeks back we got my Mom to her CT scan appointment, gave her the noisome drinks, they did the scan, and we brought her home for a much-needed nap. Then the doctor called, and ordered us to haul her to the hospital immediately.

To make a long, wearing story short: she had a diverticular abscess. Pretty big. Meaning: sometime in the last few weeks? months? her lower intestinal wall pouched out (they all do that), some bacteria and feces and stuff got in it, and caused a pressure on the wall, and that dumped out into her abdominal cavity.

Note: no fever, no pain, no nothing. Fatigue. And a bit if early satiety, which kindof goes along with extreme fatigue when you think of it.

Now my Mom is on the mend. She spent a week in the hospital, had a bunch of tests and a bunch of poorly-coordinated teams (surgical GI, medical GI, emergency, and all the therapies you could want), and has a little drain in her belly that I need to clean every day. I was a diligent and mostly antagonistic Patient Advocate, so she seems to have survived the trip relatively unmarked. She feels “better”, in the sense that anybody who’s spent a comfortable week in bed being taken care of can feel “better” when they suddenly have to get up and walk and move and take a pantload of icky antibiotics and stuff. Sometime soon they’ll do some more tests, and check to see the abscess is healing and maybe take out the weakened section of colon. We’ll burn that bridge when we get to it.

But meanwhile, I have a quandary. Everything in the hypothesized disease course makes a lot of sense… except for one thing that makes me feel like a crackpot. Prednisone weakens intestinal walls, and masks inflammatory responses and fevers, and thus limits pain. And little old people tend to have diverticula anyway, and there’s plenty of epidemiological work on the risks of diverticulitis in long-term corticosteroid patients. And sure, the fundamental cause might be a malignancy (not too worried about that right this second), or a structural effect of the prednisone, or for all I know (pet hypothesis) all our gut flora are trying to form these lovely anaerobic abcesses so they can go to town on our delicious guts without being overly bothered with oxygen and stuff.

But see, I get the big picture. I’ve been carting my Mom around for most of ten years to various doctor appointments, and following all her docs’ hypotheses about her symptoms and etiology and suchlike. And here’s the fact I have that doesn’t enter into the workups of all the docs on this case (including rheumatology): I can recall five times in the last few years when my Mom was given an antibiotics course. Every time all her PMR symptoms immediately and completely cleared up.

True this time, as well.

That I don’t like. I don’t like the fact on the face of it, because it undermines the PMR diagnosis even more than just the lack of temporal arteritis symptoms. And I don’t like the consequential concerns it raises about what we might think of as the superfluity of prednisone. It makes me go to the literature and look for systemic bacterial rheumatological symptoms. And all I come across are (a) old case papers about people who started to hurt and then got a fever and died right away, and (b) kook papers about how milk or gluten or HGH or bacteria cause cancer and asthma and how if you have lots of nice enemas you’ll be all better.

Prednisone will also ameliorate the symptoms of a low-grade infection. That’s the big risk I spelled out, and in this case it seems like we were lucky we caught the infection on the basis of secondary symptoms. Prednisone rambles around making changes in your body’s inflammatory system regardless of the underlying cause of that inflammation. Maybe my renter analogy above wasn’t so good; maybe I should have said it was like a slapdash handyman, cobbling together stuff out of scrap lumber and using glue instead of welds and throwing all the trash under the porch.

Now a lot of crackpots through the years have tried to hang rheumatological disease on infection. And because they have, for the most part, really been crackpots, they’ve poisoned the well. If you are a Real Doctor, you don’t treat rheumatological symptoms with antibiotics. Ever. You treat the inflammation and pain, and if you feel rich enough you might throw some Very Expensive Monoclonals at the underlying antibodies… if said antibodies are considered causal.

And yet my Mom gets better when she takes the antibiotics. Every time. No Darvocet, no NSAIDs. Limber, flexible, and just a little knotted in her joints from her osteoarthritis. Muscles AOK. Strong, even. Of polymyalgia rheumatica, not a sign.

That’s weird. And troubling.

Because… well, if it’s not just a coincidence (five tests running), and she does have a long-term infection… then why does it always come back?