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Thanks Fiona, I'm in Mackay in QLD. I asked the pharmacist yesterday what was the worst that could happen if I switched...he said nothing serious - have extra just incase, or take a dex if anything goes wrong. So today I had a pred rather than a dex, I feel fine - other than a few aches and pain and a little more fatigued than usual.
I'm also seeing a naturopath - an amazing man!!! Used to be a bubble boy until he was 13 - when his dad brought a naturopath to see him - 3 weeks later he cam out of the "bubble" and swore to help as many people as he could. he has 3 patients with cah - 2 of which are now off all steroids!! and have been for almost 2 years. He is now helping me.
At the moment we are all in a huge tailspin, my 13 yr old daughter had a minor heart attack and it has been discovered she has only one kidney, but 2 uterus - both very enlarged and full of cysts. To top it off a loud heart murmur and she has been having bad asthma attacks. Go figure, nothing ever happens in small doeses aye. But yes it would be great to hear from you. Its always great to have someone to talk to with something in common.
Let me know if you want to get in touch. If you don't hear from me straight away, we have been running back and forth from the hospital.
