Hi Susan,

To answer your questions, easy ones first:  No, the dex liquid doesn't have to be refrigerated (thank god!), so it is very convenient to pack and travel with.  Usually, I just throw everything in a ziploc baggie---bottle of dex and syringe---if we are going anywhere overnight.  It took a while, at first, to get the hang of drawing out the liquid with the bottle tipped upside-down, pushing the plunger to expel the air and get the dose just right, etc.  Now, it is second nature, and the whole process takes about 5 seconds. 

And, yes, we are in the U. S., in the state of CT.  As far as I know, the dex elixir is not at all difficult to find (I'm assuming that is the reason for your question.)  Our current prescription is at the local CVS, but we've also had it filled elsewhere, and I'm pretty certain it is carried by most pharmacy chains.

And as to why my son takes his dex in the morning:  Actually, I never really thought much about this until recently.  We were instructed to do so, by my son's doctor, upon initial diagnosis, so that's what we did.  Since he has a lot of experience using dex (he is one of the authors of the paper I mentioned earlier); we have great faith in his knowledge and abilities; and we have never experienced any problems with morning dosing, there was never any reason to question his approach.

This issue came up recently on the LOCAH board.  (See "Best Time for Meds" posted by Christina on 05/14.) One of the responses was that it was important to take the dex at night because of the early morning surge of hormones.  Knowing a bit more about CAH and medication now, than I did when my son was first diagnosed, I'm not certain I would agree that pm dex dosing offers a clear advantage over am dosing, in terms of suppressing the adrenals.  Given the fact that dex is long-acting, it seems like suppression should be fairly consistent over the course of 24 hrs, if one is on the right dose---the more important issue might be when the meds wear off.

In thinking about this a little bit more, and since you've brought this up again, I've decided that there are a few more advantages with morning dosing, mostly having to do with practical issues.  Like I said, in terms of overall adrenal suppression, I'm not convinced that it makes much difference, either way: 1) Morning dosing would avoid the insomnia issue. Since glucocorticoids have the effect of raising blood sugar levels, I'm not surprised that many people who take their meds, right before bedtime, report problems with sleeplessness.  2) I think it would be very difficult to get an accurate test result, if dex were to be taken at night.  Blood drawn the next morning (when the dex is still very active in the system) would almost certainly show good suppression, whether or not that was really the case.  And blood drawn late in the day, when the dex is starting to wear off, would probably provide an inaccurate picture of control, too, since hormone levels are naturally low at that time of day.  (With that said, I don't think numbers are really that important, once you're an adult and finished growing---you don't have to walk as fine of a line between under- and oversuppression, so this is probably more of a concern with assessing good control in children.)

And 3) I'm wondering whether or not the problem you described of "pooping out" at the end of the day, has to do with the fact that you are taking your meds at night.  In other words, you are getting the fullest effect of the dex during your sleeping hours, but at the end of the day, when you really need it, the dex is starting to wear off.  At the BSA you gave above, it looks like your dose is just under 0.24 mg/m2/day.  As you said, that is at the lower end of the spectrum, but well within the normal effective dose range.  (My son's dose, right now is just below 0.23 mg/m2/day.) I remember you saying, in the fall, that you had problems with puffy face and weight gain at higher doses, but I don't recall what doses you were talking about.  As an adult, you have the advantage of knowing your own body and how you feel with different meds under different circumstances.  Perhaps, it's worth a try to see if, by taking your meds in the morning instead of the evening, you can improve the problem of tiredness in the late afternoon, without having to increase your total daily amount of dex. 

And as far as the dex pill vs. the liquid:  I really don't know why the liquid dex is not more commonly prescribed---most people don't even seem to know about it.  I know our endo is very adamant about only using the liquid, because of the titration issue, and, as far as I know, he avoids the dex pill, at all costs, for exactly the same reason---control.  Sometimes it seems like the only reason something is done is because "that's the way it's always been done," so, if there is no medical reason why an adult should avoid the dex liquid, I would certainly ask your doctor to give it a try. 

Good luck, and let me know if you have any other questions!