Prednisone or GCA flare

[Mstiles]

Well I posted earlier today about some worrisome symptoms of a possible flare after trying to reduce from 40mg. Just want to vent here!.... i know they are busy, but is this the norm for reumatologists!!! Do they ever call you back?

I sent an email message to “the care team” about it last week and heard nothing back. Yesterday and today symptoms were worse, some jaw and temple tenderness, occasional head pain, visible veins, lots of tinnitus, etc. so I called this morning and got put to the assistant’s voice mail, left a message. No call back. Called the office again before 5, different person assured me she would give him the message. No call from him 3 hours later. Answering service said they would page him, but they called back and said they couldn’t reach him. So frustrated! No on call doctor to cover.

I took 5 mg more of prednisone, so hope that’s enough to calm it down. (45mg total) it seems be feeling better. Cannot face the ER tonight. Hopefully I can get some sleep tonight and tomorrow will be a better day.

Thanks everyone for listening to my rant.

[Hidden]

Mstiles, I am so sorry to hear about your current nightmare! I am from the states and I love the UK, and the NHS. When I am able to work (PMR/GCA permitting) I work for the NHS at the local hospital. Some of the most dedicated, selfless, hard working people I have ever met! With that said, I am not as impressed with the senior doctors, registrars and consultants I have come across professionally or as a patient. I have found they lack a certain empathy towards their patients and many I have dealt with convey this holier-than-thou attitude that I find frustrating and unacceptable! Time to find a new Rheumy and perhaps file a complaint.

[SheffieldJane]

It is not good enough at all. It is about time that medic gave the same emergency response to possible GCA as they do to possible stroke or heart attack, as PMRPro says. If this happens again I would be inclined to call an ambulance. My experience of paramedics has been pretty positive and they are very thorough. Perhaps have print offs about GCA in case they haven’t come across it before. The end result would be more Pred, possibly injected, so your instincts were right and your body responded.

[PMRpro Ambassador]

It's probably not something people in Europe would expect because we rarely have the same access to our rheumies simply because of the system.

As the others have said it isn't good enough for patients with GCA - even the UK system where some lucky patients are supposedly given a specialist nurse falls down all the time: "Leave a message and we will call you back..." usually results in not getting a call for about a week. Mon-Fri, 9 to 5 is really not good enough for a serious systemic potential medical emergency. And in some places, while the emergency services paramedics are taught about GCA, the nurses and junior doctors in A&E doing triage maybe weren't.