cortisol resistance?
It's a possibility anyway. So the main mystery now is why, if my endogenous cortisol levels haven't really gone up, amd I doing better? And why have I had low-cortisol effects on 40mg of exogenous cortisol, then later high-cortisol effects on 17.5mp of exogenous cortisol?
Before I thought the question was, why am I not doing better than I am. But if, as now seems very likely, my overall cortisol levels have just been dropping as I've tapered, why am I doing better than I was?
And there's the third mystery, which is that the tapering has had to go so slowly.
elsmi sez: reading says: one problem when treating inflammatory diseases (so mostly rheumatoid arthritis I guess) is that when you give people steroids for long periods, their efficacy drops off and you have to keep increasing the dose.
so it is well established that the body can have "resistance" to corticosteroids
So, if my body *did* develop corticosteroid resistance, and has been re-adjusting to lower cortisol levels as I taper, then the changes are mostly tissue-level not endocrine-system level so far. So possibly these three mysteries are explained. Not sure the mystery of "why did I show low-cortisol symptoms while on a high dose of fluticasone" is answered, but it seems less mysterious in this framework?
Not clear how this could have happened to me on not-that-high doses of corticosteroids, but I am certainly within dosage range of other people who have developed these problems on fluticasone. (& apparently risk of adrenal crisis in fluticasone users, according to the 2000 data, is somewhere in the 1/12,000 to 1/15,000 range; not high, but high enough to measure. Likely the numbers are higher now, since fluticasone was still pretty new in 2000 so there was limited long-term data. Anyway. This isn't just me. Which means it should be possible to find a doctor with a clue; and academic privilege def. comes into play with the researching here, as well as with communicating the problem to the doctors. Which, well, I'll take what i can get right now.)
Unfortunately the doctor I saw last time is a registrar, and will have circulated elsewhere by the time I go back in, and I won't see him again. Whee @ having to explain the whole damn problem every time I talk to another doctor, in limited-time appointments; it's been recommended that we get a private consultation just in order to a) get a doctor with more experience and b) have enough time to explain the whole mess to them. And, presumably, c) be able to arrange followups with the same doctor maybe? NHS is great and all but not exactly ideally set up for a complicated and rare problem to get shunted to the right doctor. Meh.
(ETA: plan is not at all to LEAVE NHS; all else aside we can't afford to. Plan is to get one or two private consultations & some tests privately, parallel to the NHS but much faster, because waiting another 3 months for anything is not so great & anyway we're not sure when we'll manage to get through to an actual consultant through NHS.)
Thanks much for positive & supportive comments to the last post. It means a lot to me, I just, I'm tired. And responding is hard. And. Sorry. *flails*
Going to be tapering again, and I'm actually coming up on getting to/below the physiologic dose now, so it might be extra specially exciting this time or next.
Before I thought the question was, why am I not doing better than I am. But if, as now seems very likely, my overall cortisol levels have just been dropping as I've tapered, why am I doing better than I was?
And there's the third mystery, which is that the tapering has had to go so slowly.
elsmi sez: reading says: one problem when treating inflammatory diseases (so mostly rheumatoid arthritis I guess) is that when you give people steroids for long periods, their efficacy drops off and you have to keep increasing the dose.
so it is well established that the body can have "resistance" to corticosteroids
So, if my body *did* develop corticosteroid resistance, and has been re-adjusting to lower cortisol levels as I taper, then the changes are mostly tissue-level not endocrine-system level so far. So possibly these three mysteries are explained. Not sure the mystery of "why did I show low-cortisol symptoms while on a high dose of fluticasone" is answered, but it seems less mysterious in this framework?
Not clear how this could have happened to me on not-that-high doses of corticosteroids, but I am certainly within dosage range of other people who have developed these problems on fluticasone. (& apparently risk of adrenal crisis in fluticasone users, according to the 2000 data, is somewhere in the 1/12,000 to 1/15,000 range; not high, but high enough to measure. Likely the numbers are higher now, since fluticasone was still pretty new in 2000 so there was limited long-term data. Anyway. This isn't just me. Which means it should be possible to find a doctor with a clue; and academic privilege def. comes into play with the researching here, as well as with communicating the problem to the doctors. Which, well, I'll take what i can get right now.)
Unfortunately the doctor I saw last time is a registrar, and will have circulated elsewhere by the time I go back in, and I won't see him again. Whee @ having to explain the whole damn problem every time I talk to another doctor, in limited-time appointments; it's been recommended that we get a private consultation just in order to a) get a doctor with more experience and b) have enough time to explain the whole mess to them. And, presumably, c) be able to arrange followups with the same doctor maybe? NHS is great and all but not exactly ideally set up for a complicated and rare problem to get shunted to the right doctor. Meh.
(ETA: plan is not at all to LEAVE NHS; all else aside we can't afford to. Plan is to get one or two private consultations & some tests privately, parallel to the NHS but much faster, because waiting another 3 months for anything is not so great & anyway we're not sure when we'll manage to get through to an actual consultant through NHS.)
Thanks much for positive & supportive comments to the last post. It means a lot to me, I just, I'm tired. And responding is hard. And. Sorry. *flails*
Going to be tapering again, and I'm actually coming up on getting to/below the physiologic dose now, so it might be extra specially exciting this time or next.