Re: One hit over breakfast.
8/27/01 4:10 PM

Sounds like a good idea, but then I guess it would need a lot of testing even after the design of such a pill.  You know what its like---they have to trial anything like that for a few years!!!  What is the ingredient in such a pill that actually makes it slowly release the contents throughout the day?  Maybe we could approach the manufacturers!  I think it sounds like a real good idea actually and fool proof in that there is only one dose to remember.  Also why not do it with the florinef?  From what I have been reading about dex though, it is only the same as hydrocortisone in that it is a glucocorticoid but that it just has longer lasting properties and therefore more potent.  Also from recent studies that it can be given to children with CAH and cover them all day instead of 8 hourly or less.  I guess because it is more potent, you just have to be very careful that you dose it correctly and we all have to do that anyway with the hydrocortisone.  I don't know about anyone else but I have always prefferred the syrup in that sense because if you go to the tablets, when your childs dose needs raising the doctors have a tendency to work with those thereafter and when they do a dosage raise they jump up 2.50mg instead of anything less, which is what happened to us.  This lead to oversuppression and was left for a year or two as the consultant we saw then beleived that our child would 'grow into the dose' would you believe!  Then when he did finally start growing into the dose after some time and we changed endo's 'he' felt we needed to cut back!  When they cut back, they cut back by 2.50mg which simply cause a lot of problems with my child in the undersuppression direction then.  With the syrup (I know there has been some bad press with UPJOHN, but syrup can be made by the pharmacist---besides---someone needs to address the problem really ) the dosages can be slightly altered as they should be.  I don't think that biofeedback works in the way that my childs increases and decreases were done.  Hence the extremes to which my child went.  I feel that moving to the dex syrup would be a much better idea as they will only be able to increase and decrease subtly like Carol says and not do big jumps.  They will have a more conservative attitude to dose alterations I believe which will be more in line with what my childs body should do at the end of the day.

 

JH

 

Julie H
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