Hi Dana,

Sorry for the problems that you have been having. You’re right that acne in CAH is usually due to undersuppression and high levels of androgens. But, I believe it can also be a side effect of high doses of steroids and oversuppression. The same with moodiness. In your daughter’s case, it sounds more like oversuppression....especially since she also has very low 17-OHP levels and the slow growth rate.

I DO NOT have any personal experience using Orapred, but this is what occurs to me, as I read your post:

First, there is nothing inherently wrong with using a liquid medication. The liquid Cortef was recalled because it had stability problems due to the fact that hydrocortisone is not water soluble. But, dexamethasone and prednisone both are water soluble, so both pills and liquids can be used with no fear of the medication settling out of solution. The advantage of a liquid is that you can increase/decrease in very exact amounts. The disadvantage is that liquids come in all different strengths....so you really have to be careful that you know how much medication you are really getting. In other words, a tsp of a very dilute mixture may contain a completely different amount of medication than a tsp of a very concentrated medication.

As you know, Orapred is a liquid form of prednisone (or, to be more exact, its closely related compound "prednisolone.") So are Pediapred and Prelone. The thing is that each one of these are of different concentrations....so a tsp of Pediapred does NOT contain the same amount of medication as a tsp of Orapred.

From what I can tell by looking up all three on the net, Orapred is the most concentrated of the prednisolone liquids, followed by Prelone, followed by Pediapred. One website I found said that there are 20.2 mg of prednisolone in each 5 ml of Orapred liquid. (But, you should double check the label on your bottle of Orapred, jsut to be sure.) This means that there should be a little more than 4.0 mg of prednisone in each ml. (A "ml" is the same thing as a "cc.")

In contrast, Pediapred contains 5 mg of prednisolone in each 5 ml of liquid. This means that each ml of Pediapred contains only 1.0 mg of prednisolone, meaning that Orapred is more than four times stronger than Pediapred.

You wrote that your daughter was getting .2 cc of Orapred, which was recently reduced to .15 cc. That means that she should have been getting about 0.8 mg of prednisone (0.20 x 4.0), which was then reduced to 0.6 mg of prednisone (0.15 x 4.0). That is all well and good, except for the fact that it is it EXTREMELY difficult to measure out 0.2 or 0.15 cc of medication. So, I wonder if maybe 2.0 cc of Orapred was given, instead of 0.2 cc....which means your daughter your daughter may have been inadvertently getting 10x the amount of medication that she should have been getting.

I also wonder whether the doctor actually intended her to get the equivalent of 0.8 mg of prednisone or 8.0 mg of prednisone....or perhaps neither amount. One dose sounds like a too-small amount. The other sounds like a way too-large amount. Whichever it is.....something doesn’t sound quite right, either way.

Bottom line...the problem may not necessarily be with the medication itself, but whether there is some sort of misunderstanding or miscalculation as to its potency, relative---not only to hydrocortisone---but to other prednisolone liquids. I also feel that there is the possibility that the wrong amount of medication might have been given...just because it is so easy to misunderstand the difference between, say, 1.5 cc and 0.15 cc. Again, it may not be an inherent problem with the medication...it is just that, in this case, the possibility of some sort of human error, I feel, is great.