Congenital Adrenal Hyperplasia

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re: re: re: Changes to Florinef storage
Nov. 14th, 2007   8:06am

I cannot understand the need to change, when the old tablets worked!  I do consider keeping medication in the fridge a bit of a nuisance, especially if there is an alternative.  If you are going on holiday for instance, backpacking  or even on a long haul flight, it would be hard to keep the tablets at the suggested temperature and if they fall below, then they might not work.  Fludrocortisone is vital for salt retention, so in this situation (in a hot country) could be life threatening.  Also there are patients who take half and even quarter tablets which would not be so easy to cut if kept cold as I assume they would go hard in the fridge.

The current tablets are not expensive, so it is not a cost cut.  Whilst I appreciate we are lucky to get our meds on the NHS, I suspect it is the drugs company trying to make some extra bucks here and as there is no alternative to fludrocortisone, they have us over a barrel!  I have already had a couple of replies from endocrinologists who recognise the problems and this change has been described by one as 'ludicrous!' and the other as 'totally bonkers'.  They are on going to look into this too, so thanks Chelsea for alterting us!  

Sue




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