Thank you, as always for making such great points.

We can ask about a biologic to get off the prednisone, but he has currently a Medicare Advantage plan (yes, yes I know, they’re notoriously bad, but he has some kind of new “flex” plan that’s supposed to be better and we haven’t had problems with it plus his prescriptions are far cheaper than they were under Medicare + Supplement, which I still don’t understand). But even if we switch his plan, it always just seems like it’s much harder to get specialty medications under Medicare. I have this feeling his rheumatologist would suggest methotrexate first or something.

I don’t want him to be on prednisone lifelong either, but his disabilities (post-stroke) are severe. As it is now, every time we try to taper there’s the potential for disaster. Even “short-lived” fatigue and muscle weakness can and has wreaked havoc because he has dysphagia and severe weakness on his left side. That’s why I say we’re unsure if it’s worth the potential impact on his quality of life to continue struggling to taper if the end result may be…a long term low dose of steroids. I’m honestly not even sure if we could manage the cortisol test if it’s an early morning and/or fasting test (it is nearly impossible to get someone with a severe brain injury dressed and out of the house for an early morning appointment and fasting tends to exacerbate any sort of mood disorder or agitation related to said brain injury). SIGH.

A bad taper results in severe difficulty swallowing (so constant choking on his saliva and imminent risk of aspiration pneumonia) and inability to stay awake, which means we can’t transfer him from place to place and he can’t make it through PT—if you’re on Medicare and can’t show “significant improvement,” you get booted out of PT every 2-4 weeks, which has happened several times because of PMR-related fatigue without forgiveness. It’s just this cascade of things.

I’m reluctant to switch him to hydrocortisone (I think that’s what the endocrinologist said was the alternative?) because it has to be dosed twice a day and he’s on a feeding tube. So it’s not a simple matter to double the number of doses of medications—it has to be crushed and diluted in water, injected into the tube, then the tube has to be flushed with water, and you need to be somewhere with supplies where you can do it 🤯.

It’s probably not the ideal thing to do but I just don’t know what to do because every option has unpleasant and difficult to navigate drawbacks, and so instead we’ve done nothing since his Endocrinology consult. We can’t even decide if we should try tapering the prednisone again.

Well. Now I’m just venting. But I don’t know if I hate PMR more or the stroke more. Things just seem less bad on a 6 mg dose but eventually the responsible thing for us to do would be to message his rheumatologist again. His inflammatory markers are up and she asked me if he seems to be in a flare, and I literally wanted to say: “I have no clue because he can’t tell me and he’s half paralyzed!” But I did not say that lol. I think she’s at a loss of what to do too.