I have a wonderful, caring rheumy. She sends me for every test. She calls me at home regularly . She told me she wants to give me the best care possible. I have monthly bloodwork done and a CRP as much as weekly if necessary. I have had PMR for 2 years. I think I have had GCA for a year but kept hoping it would go away. That is when my sore ear started. Now I wake up with headaches. I say headaches because they are more like little hammer hits here and there and pressure on the side of my face. After I am up for a few hours they get better. Not intolerable but annoying and sometimes like movement under the scalp. Sore scalp once in a while.
Appointment with opthemologist was good. Eyes fine. MRI okay, but petscan indicates arteritis. I said is this giant cell arteritis , answer yes. Now here s the kicker,
Just stay on my 7 mg. Pred and waiting for approval for actemra. Not sure what I would have to pay but 2 grand a month won’t be happening, I asked about high dose pred and apparently the new literatures discourages that.
Live in Canada and have never heard anyone not given high dose pred .
Anyone out there dealing with GCA without the high dose hit. ?? Thanks for any input.
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Chopin002
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"I asked about high dose pred and apparently the new literatures discourages that."
What utter tripe. All the guidelines say that high dose pred should still be initiated where GCA is suspected even if there is a delay in having attempts to confirm the diagnosis with ultrasound or biopsy.
These are the 2020 international guidelines (can't get newer than that):
where you will see the following in Recommendation 1:
"How should suspected GCA be treated?
1. Patients in whom GCA is strongly suspected should be immediately treated with high-dose glucocorticoids. Consensus score: 9.61.
‘Strongly suspected’ GCA means that in the assessing clinician’s judgement, GCA is a more likely explanation for the patient’s symptoms than any other condition. The assessing clinician may take into account GCA symptoms, signs and laboratory tests (such as acute phase markers) [25, 26]. The risk of toxicity caused by short-term glucocorticoid treatment commenced in patients with initial strong suspicion of GCA but then diagnosed with an alternative condition is acceptably low as long as a full diagnostic evaluation is performed promptly and it is acknowledged that a suspicion of GCA is not the same as a diagnosis of GCA. For doses, see below."
In the following you will see
"If GCA is strongly suspected, the first dose of glucocorticoid can be given without waiting for laboratory results"
and in Table 2 the recommended starting dose for GCA is
"40–60 mg oral prednisolone: initial dose for patients with active GCA"
They are playing with your vision - and if you were to develop visual symptoms then you are at risk of sudden and irreversible loss of sight. A few days of high dose pred is not going to cause anything as devastating as that.
Please ask them for their references - because I would like to read it! Show them this link - and point out that you will sue them if you do lose your sight. Living with impaired vision is expensive.
Well, when my GCA kicked off, just the suspicion that it might be GCA was treated as a clinical emergency. I was picked out of the queue for the clerk’s desk in A&E/ER (GP had called) and I was given 60mg Pred before anything was done.
A normal eye test does not mean the GCA isn’t in some other cranial artery and it could spread to the ones supplying the eyes. I have got hearing impairment on my right side since GCA started, so it isn’t just eyes at risk.
I too would want to see sources of good evidence that high dose Pred isn’t a good thing while the paperwork is being sorted out. While they are considering their academic conundrum in the face of clear evidence of GCA, I too would be airing words like litigation in the event of loss of sight, stroke, hearing loss etc.
I am scared. Have called for appointment to discuss further.
If I do take 40 mg. Pred will the face and ear pain go away. ? That alone would be a relief although can’t imagine what else I will feel . I am now in the mindset that I need it.
I lived with GCA for 18 months without ANY Pred - not by choice, but because it wasn’t diagnosed - and it did result in loss of sight in right eye.
Your Rheumy is wrong about guidelines, unless the Canadian Health Ministry or local Health Authority is going it’s own way (dangerously in my view) and is playing Russian Roulette with your health.
PMRpro has said living with impaired sight is expensive - it’s more than that, it’s life changing - and devastating if all sight is lost.
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Update on my GCA diagnosis 
Any experience of having GCA and Actemra (TCZ) being discontinued while still trying to taper steroids
What’s my diagnosis?
Suspected GCA after April Diagnosis ? Not confirmed yet
Burning scalp
