To Anon
Jan. 15th, 2004   1:32am

Anon,

I can only speak of my own experience, re. how one feels when their 17-OHP levels are up. In 2002 & 2003 I was trying to wean down my steroid dose, in an attempt to assess which was the lowest possible dose that both held my levels in check, as well as, made me feel well and able to function.

My endos had always said for me to take 7.5mgs of Prednisolone (medium acting steroid). However, I secretly wondered if the doctors always prescribed this dose, merely for its convenience rather than a genuine attempt to find out what is truely the best dose, for their patient. So I thought, given that this is a ’for life’ medication, I didn’t want to be taking more than I had to, (because of steroids potential detrimental affects), so I began a relatively slow weaning process to test the ideal dose, for me.

So I reduced my dose by 0.5mg (1/2 mg) approx. every three months until I got to 5.5 mgs. At this dosage I really started to get unwell, sore/stiff joints/muscles, exhaustion, rashes, persistent cough etc. I went to my GP to ask for an extra 17-OHP level to be done (between visits to the endo) and sure enough, it was elevated around the 3,400ng/dL mark, so, not grossly elevated but enough to make me feel rotten. I immediately increased to 6mgs and within a week the stiffness in my thigh muscles subsided and within a month I felt much better.

I have stayed on the 6mgs, and have remained free of the above symptoms.

 

Megan
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