PMR flare brings on GCA symptoms

Yes you should tell your eye doc everything - as artfingers says, GCA is not something to mess around with.

If you have GCA you are at risk of losing your sight, irreversibly if it does happen. Currently, the only treatment for GCA is high dose pred to reduce the inflammation that is causing the reduced blood flow to the optic nerve. If it is reduced too far or for too long the optic nerve suffers so much damage it is no longer able to transmit the signals from the retina to the brain and you lose vision. It isn't just the headache that the pred helps with. 

I know you are right...  Gonna take another 10 mg tonight  as headache not subsiding well.  See Rheumy tomorrow.

10mg is not enough for GCA - in fact I'm concerned your ophthalmologist didn't send to to the rheumy immediately if they can't provide a prescription for high dose pred.

I don't even know if a biopsy before your pred course would have shown the giant cells.  There might not have been any in the tiny sample of tissue you can take.  I think it is shocking that your doctor would suggest going off prednisone in order to find out, considering your symptoms seem pretty definitive.  As Eileen said, the side effects of CGA are a lot worse than the side effects from pred.

If I were you I think I might look for another ophthalmologist because msot of what he'd said is highly disputable! 

The LAST thing you do to a patient with query GCA is take them off pred to do a temporal artery biopsy! The TAB is positive in only about half of patients - if it is positive it is 100% proof it is GCA. Being negative does NOT mean the patient does not have GCA - it merely means they didn't find any giant cells. They are not evenly distributed and skip areas and it requires both an experienced and able surgeon to take the biopsy and an experienced and able histopathologist to look at the slides and even then they may not see them.

The diagnosis remains a clinical decision in that case - and since there is such a serious risk of blindness if you dismiss the patient without pred, if the symptoms look like a duck, walk like a duck and quack like a duck - it should be treated as a duck.

Sorry for the delay in replying but i've been locked out of the forum! I wondered if they were trying to get rid of me but I'm nothing if persistent! You don't get rid of me that easily...

Thanks Eileen! Glad you persevered. Do you have your history/experience posted in this forum or elsewhere? I'd be interested.

I haven't read anything about prognosis yet. Still a bit shocked. All in due time. The good news is I feel terrific on 60 pred. 😄

Me? I developed the symptoms of PMR slowly over a period of about a year some 11 years ago. It was not diagnosed for over 5 years despite repeated visits to the GP. When it went totally downhill it still wasn't recognised and I spent about 4 or 5 months doing extensive internet reserach and finally - by accident - found what it probably was. The GP still wouldn't concur as I have never had raised blood markers and the rheumy I saw wanted it to be anything except PMR despite a textbook response to 15mg pred. I could manage stairs normally again after 6 hours! A different GP was sufficiently convinced. I had a major flare about 4 years ago due to duff prednisolone and was switched to Medrol which also didn't work for me. Finally I was switched to Lodotra (Rayos in the US) which has been fantastic and allowed me to reduce to 4mg. The PMR is still there - even 3.5mg is too far. It is very likely that what I had was GCA though not affecting blood supply to the optic nerve so almost no visual symptoms, I had scalp pain and, at a different time, double vision.

I worked in the NHS, am a qualified medical lab technologist, so have background in that field, and have a physiology degree. I also worked for many years as a translator in the clinical trials field so have a lot of background knowledge from there. I don't have a medical degree - but I can read clincial papers/textbooks as well as the next. Myspecialist subject: PMR and GCA.

Prognosis for you? With a slow and steady reduction - no heroics - you will eventually get off pred. But you are looking at at least 2 to 2 1/2 years - faster is playing with fire. Don't allow doctors to persuade you that something will ensure a faster and more reliable reduction of pred - there are no guarantees here. But you will get there. Just be patient.

I don't know if it is colour - there is an ultrasound test that demonstrates a halo around the temporal artery. It is a relatively new procedure and there are not that many people trained to do it in the UK so it isn't generally available. I have no idea what the status of trained persons is in the US - but unless they are trained for what they are looking for then the use of U/S to do this is not a lot of point.