Hi Kristyn,

In answer to your question below, I have started a new thread rather than tangle up with Steve’s thread, which is dealing with another aspect.

Yes I ’cold turkeyed’ on my Pred in the early part of the nineties. A few weeks later I developed very stiff and sore muscles - I could barely walk, then developed erythema nodosum (big, red hot, painful weals on my legs - often coincides with major organic disease). I stabilised somewhat when I took an homeopathic Adrenal glandular remedy for a few years. A couple of winters later people started to tell me that I had a lovely tan -yet I felt so ill, but I was stubborn. Then I was hospitalised for ascending cholangitis, developed pneumonias, skin rashes, pyelonephritis (UTI’s), coughs, terrible constant nagging pain in my adrenal area on both sides. I felt a wreck! The oily hair, acne, and facial hair which developed were the least of my worries, as I felt so sick. Eventually I realised (duh) that I needed to have my adrenal condition re-evaluated. Some tests done and back on the Pred.

No it’s no bed of roses even now, but I do feel better than then. I have no doubt I would be dead now, due to severe adrenal insufficiency, if I had not gone back onto the meds.

The issues which lie at the basis of non-compliance are interesting and I think require much more study.

Firstly for me, looking at why I stopped taking my medication in retrospect, I believe largely stemmed from an essential lack of information and education about CAH. No one had ever explained to me the core and fundamental underlying disorder and its outworkings in the body. When children have a medical condition (largely unseen) and require treatment from a very young age they need to be fully informed as to why they need it AND the doors of communication to answer questions and for age appropriate information need to be open ALL the time. This information needs to be from both parents and doctors. There is no room for secrecy and shame.

Others reasons for non-compliance are very individual but the weight gain issues, the round face issues, feeling lousy anyway and thinking that you couldn’t feel any worse off the meds, feeling that the meds aren’t helping you to achieve good general health/fertility, laissez-faire attitudes of doctors by their perfunctory treatment of you on visits, feeling different from friends because of the need to take medication, wanting to try an alternative medicine etc. etc. can all be justifiable in the persons mind.

So I would encourage you to think about why you wanted to go off the meds. Then be open minded and ask for follow-up tests from a/your doctor periodically to see that your levels are on track ( they probably wont be). If you don’t understand what all the hormones tested for are and their normal parameters try to get some of your old records (either from your parents or through freedom    of information) for better comparison of good control and poor control.

Kristyn, don’t be stubborn like me. Keep a close eye on how you’re feeling. One problem is that an event may happen outside your control eg. accident and you’ll be in a very bad place, as you could have an insufficient cortisol response to the incident and just succumb.  We think we are in control but we are not always.