Tuesday, June 18, 2013

Cortisone? Better? Silence...

Oh MAN, what a talk I had yesterday with my doctor, about mega-dosing steroids.

I'd been getting pressure from one of my health-care team (also an MSer) that yeah, she knows I don't feel a lot of affinity towards the "Western-medical approach," but maybe this time it might be worth trying. For those of you who don't know this treatment, it's 1000 mg of IV cortisone (or whatever the trade name is for whatever they use but basically, it's cortisone), once a day for three to five days, then often several more days of "taper," follow-up lessening dosages (which hopes to facilitate easing the body back in to producing its own cortisone, which it does anyway, but not in those dosages). Just for your reference, "standard" oral doses for arthritis, for which it's a common treatment, is I think 5-60ish mg per day. Not a thousand. Or, in other words, an entire gram of cortisone, intravenously. Per day. (And just for comparison, my daily dosage of thyroid hormone is five micro-grams.)

So, yesterday I spent much of my appointment with my MD/acupuncturist (also an MSer, who has himself had this very treatment) about a pile of questions I had. Now, I cannot stress this enough to my dear readers, that I am not making any recommendations, I am not claiming expertise, your milage may vary and all that stuff, and all I'm doing here is repeating what I remember of my questions and his answers. I'm not "recommending," I'm just sharing.

He said that cortisone therapy has been around for a while. Years ago (1960s, I think he said), they used to dose you with ACTH, which made your own body produce high doses of cortisone. They don't do that any more. He didn't know why.

At some point, they (whoever "they" are, we didn't talk about that) started doing this mega-dose stuff. It hasn't been formally tested. It can't be. Specifically, it can't be blind tested, the ideal being "double-blind" where neither the people administering nor the people testing know whether the medicine being tested is real or "placebo," in other words "fake." It can't be blind-tested because the symptoms of that dosage of this stuff is spectacularly obvious to everybody. So, this treatment has never gone through the formal testing that most treatments must undergo.

OK, I asked, what about non-mega dosages? Standard arthritis amounts tend to go up to 60-something mg from what Google led me to find, what about that dosage? Or just a little more, like 100mg? 200mg?

That hasn't been tried, as far as he knew. Nuclear-saturation-bombing dosages or nothing. He was conspicuously clear about not leaping forward to say "Well, let's try it!" From his point of view, small to moderate cortisone dosages were Simply Not Done, and from what he knew, never have been, and with him and me, we weren't going to try it.

OK, I said, my herbalist who's very much into not Google research but real research, and can actually understand scientific papers (and has written them) said that there's no difference between IV and oral with this treatment. Actually, he leaned towards me, looked sternly over his glasses, and vehemently said "NO difference." (Which comports with my non-scientist reading of what even I could find via Google.)

Well, my MD said, nobody does oral administration. It's IV or nothing. (See above about how he and I weren't going to be in the "experimentation" business.)

OK, I said, let's do a thought experiment: Using whatever method, and taking the surviving-the-entirely-nasty-treatment-experience off the table, let's assume that POOF! Absolutely zero inflammation! Nothing! All gone! Now that I am 100% inflammation free, how long does it take for the "getting better" to set in?


This comports with my own non-scientist reading of what Google directed me to... they (whoever "they" are) know what the treatment experience is like, but post-treatment? Things getting "better"?


Doc finally says that this whole regimen is confused by the variability of MS. Sometimes (especially with people with clear relapse-remit cycles), the symptoms just get better. Nobody knows how or why. They just do. One of my other caregivers said that one of the indicators of "it's MS that you've got," is that the symptoms keep changing. Constantly. So there's no way to know whether the patient's experience of "better" would have happened anyway just because of the variability of the disease; plus, nobody has any data about "here's when the patient got better because we gave them the steroid treatment."

Final decision: Bail. Nope, we're not gonna do the "steroid treatment." MD said that if you get optic neuritis and go blind, or some other nasty nasty things happen to you, there's not a lot of "worse" that it can get, so at that point it's worth trying the Hail Mary play. But until then... let's not.

Especially because I'm trying a new herbal formula (recommended by a different MD who's specifically expert in such things and to whom my regular MD referred me) in tincture, and for once with all things herbal, the taste ain't half bad. The stuff in this formula has been blind-tested to be neuro-protective and actually quite useful with MS patients, and my initial reaction was a feeling that could only be described using the word...


How often do we get to say that?

Which, from what I heard yesterday in my MD chat, isn't guaranteed or even available with mega-steroids, and certainly wouldn't be true of the treatment itself... That, at least, they know for sure. Everybody knows that for sure.

Well, one thing's definitely true about traveling the MS Highway... you sure do learn a lot.

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