Hello everyone, I have been on various doses of prednisolone since diagnosis 20 years ago. Even though I'm on cellcept and plaquenil I have never managed to get completely off the steroids, just recently I got down to 3mg daily but bloods started going a bit haywire. My rheumy then did a synacthen test and telephoned me a few days later to say I failed it and so would never be able to go off steroids but rather would have to increase the dosage to 5mg daily. She also said as my body was no longer producing cortisol anytime I was ill, involved in an accident, or in severe shock I would have to increase the dosage and if ever I wasn't able to take my tablets due to for example tummy bug I must go straight to A&E for a steroid injection!
So as you can imagine I'm really disappointed not to be ditching the 'devil's smarties' and a bit nervous about all the other stuff, so would really appreciate hearing from anyone else who as been through the same.
Many thanks.
Bronagh2015
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Bronagh2015
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I hear you. I also have to confess that I had to look up Synachthen which was enlightening, except with the brain fog, I can not remember what it was! No, don't laff, it is wrong to laff at brain affected people.
So sorry for your troubles. On here you will find support, help and compassion as we all strive for answers. Someone on here will know your plight and will have some words of wisdom for you.
I simply hold out my hand to s fellow sufferer and comiserate with you, say welcome to the board and hang in there.
We are all dancing slightly different jigs here, but as we bump into each other knowledge is shared, advice offered and support freely given.
Thanks footygirl, I can understand you having to look it up I didn't really understand it either, I'm just lucky to have an excellent rheumatologist who took the time to phone me and spent quite a while explaining it all to me. It would just be great to hear from someone who has the same, but sure I will be grand and thank you for taking the time to reply I really appreciate it. Xx
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