I saw a GP in person this week for the first time in ages and she was great. Gave me a full 20 minutes and really listened 😊
She accepts that i am having real difficulty getting below 7mg (am currently trying to get to 6.5). She told me not to try at the moment to get lower than 6mg as she will be consulting an endocrinologist for advice. (This bit I’m not so happy with, but it’s a plan, and she is the medic… ). Thinks I may need to go on to hydrocortisone.
Also agrees that I have severe OA in multiple joints and will review pain control (I’m currently on codeine 15mg, paracetamol and ibuprofen gel). Concerned that pred taper will result in more OA pain but I felt she’d ’have my back’ on this.
Re fatigue she hopes endo can help. If not, thinks I may have long covid and will refer me to clinic.
To drop now to 6mg and bloods to betaken in one month.
I know it doesn’t solve much but finally, after nearly four years of PMR and GCA, I feel I’ve met a doctor who’s taking me seriously 🎉xx
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Nextoneplease
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There isn't anything an endo can do at the dose you are on really - not that they can do much anyway.
But you say you can't get under 7mg - WHY can't you? If it is the PMR, and it really sounds as if it is, your adrenal function is immaterial at present.
It’s both increasing pain and overwhelming fatigue at under 7mg. I too don’t hold out hope that the endo will be able to help as I’d need to get lower. I did put this to her but she disagreed, said endo advice was essential, so I’ll go with the flow for the moment and see if I can taper to 6mg 🧘♀️
ps it was the rheumy who first suggested endo review and wrote to GP to this effect - so I guess she may be following medical protocols for the moment
If it is increasing pain - that is PMR still active. When your body rebels repeatedly at a similar dose it is telling you you have arrived at the lowest effective dose. I have no idea what she thinks the endo advice can change at your current dose and yes, it may be essential at some point. But even they aren't magicians!!
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Good Rheumy appointment 
Down to 6mg but feeling it! Shall I persevere? 
PMR diagnosis from GP
travel sickness
Update on Rheumatologist Appointment
