Video call with consultant this morning

[Marijo1951]

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.

[MrsNails]

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! 😉

Hope you feel better soon x

MrsN

[Marijo1951 in reply to MrsNails]

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.

[DorsetLady PMRGCAuk volunteer]

Well done your consultant - pity nurse took it upon herself to overrule previous advice given by a superior!

[Marijo1951 in reply to DorsetLady]

Fortunately membership of this forum has given me the confidence to know when medical/nursing advice can safely be ignored!

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

👍

[PMRpro Ambassador]

Haha - I hope you told Dr M what the nurse had said and that she should educate her!!!

[Marijo1951 in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Marijo1951]

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.

[MrsNails in reply to Marijo1951]

My letters ready to post, l thought they may be taking emails, cutting down on letters through the post!

So will wait & see......

[Marijo1951 in reply to MrsNails]

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.

[MrsNails in reply to Marijo1951]

I’m just ever the Optimist! I asked at our Surgery if could l email the GP before l spoke to her & they said send a letter......

🤦🏻 Trying to cut down the risk of cross infection but there you go!

I did have a Consultant l could email & he gave me his Mobile when l went off on my Travels in 2012 but l didn’t need to bother him luckily!

[PMRpro Ambassador in reply to MrsNails]

Being of a cynical nature - they wanted to read it... emails probably go straight to the doctor.

[MrsNails in reply to PMRpro]

Cynical? You? Never! 😉 He’ll probably get it just as quickly knowing Doctors 😉

[SheffieldJane]

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.

[123mossie]

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!

[Marijo1951 in reply to 123mossie]

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!