Early GCA symptoms?

[Ccuf]

Hi all, first post on here but have watched from a distance for last couple of years and have gained much insight and knowledge from the community, thank you.

My question is probably aimed to those that have suffered from GCA and what the early signs were. I have had PMR for 3.5 years and am steady on 2mg of Prednisolone a day. I have tried for the last year to get below 2 using the Dsns taper but always have to come back up. Had very little interaction with my GP regarding PMR and the rheumatologist discharged me at 18 months when on 4mg and I could lift my arms over my shoulders! “Just taper off 1mg a month and your done” no mention of adrenals etc

Since then I thought it easier to deal with it myself. For the last 3 months I have had a sore/aching neck muscle on my left side. Still have movement etc but always there. Six weeks ago I had some postnasal drip overnight for a few days and tightness on my forehead/temples. I suspected sinusitis and took appropriate meds - Sudafed spray and tablets. No facial pressure or mucus from nose but did have some hearing loss in left ear. Three weeks later after no improvement I managed to visit GP. Her conclusion was probably sinusitis and wax in left ear, reluctantly said I could have some penicillin and to put olive oil in ear. After taking antibiotics for 5 days no change or improvement so paid to have ear “vacuumed” out. Found compacted wax but couldn’t remove it (2 attempts so far) was hoping it was the cause of all the issues.

So after 6 weeks I still have the slight neck pain and temple throb on my left side every day but not all day, feels worse leaning forward or when I sneeze. Paracetamol makes no difference and ibuprofen numbs it a little. My eyes feel a little tired but no vision problems. I have had no jaw pain and generally I feel better first thing in the morning.

Could it be very mild GCA or just lingering sinusitis. Should I ask for blood tests, if so which ones or should I just do a couple of days at a much higher Prednisolone dose and see if it helps?

Sorry for the long post. Thank you.

Male 59.

[DorsetLady PMRGCAuk volunteer]

As it’s now predominantly one sided would say unlikely to be GCA - but would never rule it out completely… particularly the previous tightness you describe, and the fact that paracetamol doesn’t do much whereas NSAIDs do slightly - so you do have inflammation present..

Maybe ask the GP to check CRP and ESR levels initially..and take it from there.. please keep us updated.

[SheffieldJane]

I had similar vague symptoms after being on Prednisolone for 4 years for PMR. My very thorough Rheumatologist arranged for me to have an ultrasound for my head and upper body. Abnormal cells indicating GCA in my left shoulder were found. I have never had significant symptoms in my head or signs of the GCA spreading. A blood test would be a good start but if it is your sinuses this would also show abnormal inflammation levels. Be alert for pain in the temples and any issues with your eyes in particular. I have my eyes checked by my optician every few months, privately.

[SnazzyD]

Did you oil religiously for 10 days twice a day before the ear suction? It’s important to have the wax as soft as possible.

Regards neck and temple pain, I don’t know what yours is but it is worth knowing about sternokleidomastoid tension which can mimic GCA, sinus pain and ear issues. I case you haven’t, try these.

healthline.com/health/stern...

youtu.be/_BGczs_axTg(Not working as expected?)

[PMRpro Ambassador]

Hi and welcome now you have come out in the open!!!

I'd be much more inclined to concur with SnazzyD's comments about sternocleidomastoid problems and sinuses.

You can also get earwax drops with bicarbonate in them which are sometimes more effective than olive oil. Whatever you use, they must be used properly - frequent and consequent application and while you are lying on your side for 10 mins so they don't just run straight out again. It is a bit of a faff - but without, all the syringing in the world mightn't achieve anything!!

patient.info/medicine/sodiu...

[Ccuf]

Thank you for your excellent responses. I have already switched to ear drops with sodium bicarbonate after 10 days of olive oil and hopefully another week of those will do the trick. Very interesting SnazzyD’s information on sternocleidomastoid as I wasn’t aware of it and it’s potential issues. I think I will follow that route first before considering blood tests as it looks unlikely to be GCA thankfully.