I posted 12 days ago that I had had what seemed a flare up of GCA symptoms. it manifested itself at first as severe jaw pain and subsequently I developed the typical GCA headache. I rang the Royal Free Hospital and their excellent 'gofer' made me a video appointment for today and put me through to a rheumatology nurse for some advice in the meantime. I told the nurse that I had increased my pred from 5 mg to 10 mg for a couple of days and she told me off for self-medicating. She said she would get one of the rheumatologists to call me back before the end of the day. Sad to say, nobody called (!) so I just carried on decreasing the dose to 8 mg which seemed to keep the symptoms at bay.
The video call was this morning with my consultant Dr Mangat. She said I'd done exactly the right thing to double my dose for a few days, to stay on 8 mg for a month and then try to decrease by 0.5 mg per month, which is just the advice I would have given myself.
I was ridiculously nervous before the call, but now feel pretty enthusiastic. It wouldn't answer for a first appointment needing hands-on examination, but for follow-up appointments it works well. Dr Mangat said she finds phone appointments difficult, but it makes all the difference when she can see the person.
Written by
Marijo1951
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That’s good Marijo & a shame that the Nurses are not in the same page as the Consultant & glad you did the right thing.
I’m mid way through an email/letter to my Consultant Pre Next Consultation, l’m just editing it now. I had the same response from a Nurse who didn’t know me obviously quoting from a Standard Crib Sheet & l’m not Standard by any means! 😉
Thanks. I was surprised by the nurse's reaction, because I'd been advised by the consultant during my first appointment to up my dosage if I thought I was in a flare and then get medical help ASAP - which is what I did! I hope you get a satisfactory response to your email.
No, I thought of that afterwards. I should also have complained about the nurse promising a call back from a doctor which never arrived. If I'd been less well-informed I might have gone back to 5 mg and suffered the consequences.
Exactly. And the not getting the call back is even more important - just think if someone had lost their sight because of that nurse? At least had the doctor called back that could have averted such a disaster.
Good luck. When you mentioned emailing your consultant I thought 'Lucky thing!' because there's no way of emailing the doctors at my hospital. I mentioned Keith the 'gofer' - fortunately he's really intelligent and good at his job, so it's possible to phone him with messages.
Glad you got the confidence building feedback for your decisions. Dr Mangat needs to learn to embrace new ways of doing things like the rest of us. I find my appointments more planned, structured and useful over the phone. The nurse needs to stop being a jobs worth. You know what you are doing.
I’m glad the consultant supported your ‘self medicating’ its a shame some health professionals feel threatened by patients using their common sense and experience.
We used to have ‘expert patients’ to come into the surgery to talk to newly diagnosed diabetic or heart disease patients, they were excellent for support and info. A bit like this forum actually!
That's a really good idea. It must be great for newly diagnosed people who are feeling all at sea to learn from others who have been through the same thing - as you say, like this forum!
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