Possible GCA ?

[Mi_49]

I would be interested to know what others think about my current situation.

I was diagnosed with PMR about a month ago and was put on 15mg prednisolone which was about 80 percent effective. However, I was getting pain around my ear and also headache which came and went.

Fast forward to one week ago. I rang GP because I was concerned about headache which seemed to be getting worse and also tenderness in cheekbone. I was examined at a GP hub, (because of lockdown) and was sent to A&E as a precaution. I had very good treatment and was examined by several doctors, all of whom weren’t overly concerned about GCA. I had a diagnosis of Sinusitis and was given antibiotics, but a consultant arranged for me to be fast tracked to a Rheumatologist for the next day.

I was also given an ultrasound scan of my temporal artery the same day, which didn’t show anything untoward.

After careful consideration by the Rheumy I was told to continue on 15mg pred for the next week, with a view to reducing to 12.5mg the week after.

Now here’s the thing... I’ve continued to have pain in my face, head and temples even after the course of antibiotics. The headache is not relieved with Paracetamol. Should I go back to A&E for further assessment?

[SheffieldJane]

I think I would. I had just completed a course of antibiotics for sinusitis when I was diagnosed with GCA. I also had an ultrasound one month before that showed nothing in my temporal arteries but large cells in my armpit. My symptoms just continued to worsen and become more recognisably GCA. There is no real penalty for unnecessary GCA treatment but awful consequences if it is missed. There is definite ear involvement in GCA for some patients.

[Mi_49 in reply to SheffieldJane]

Thank you for the quick reply. I’ve just rung the GP surgery and I’m waiting for a call back, I will let you know the outcome...

[jinasc]

Apart from everything else, have you had loss of vision even for less than a minute or blurred vision? If so, then prompt action to A&E. If not follow the link

link.springer.com/article/1...

it is quite possible your medics have not read it yet - it only came out last year.

Then I would be getting in touch with the Rheumatologist, I presume you have the contact number.

If s/he is not available, I would be pursuing this and going back to A&E and this time ask to see the Consultant in charge and tell him the whole story.

I know we could be wrong, but it is your sight and your headache.

[Mi_49 in reply to jinasc]

I haven’t had loss of vision but I suffer with dry eyes anyway and I feel like I need to blink more often if that makes sense?

[PMRpro Ambassador in reply to Mi_49]

That is really common with autoimmune disorders,

[SnazzyD]

Just because giant cells weren’t seen in the arteries they scanned, doesn’t mean they are nowhere else in the cranial network. Tinnitus and hearing loss were my first symptoms a year + before the main event.

[Mi_49 in reply to SnazzyD]

I have suffered with tinnitus for about the last 5 years so I'm not sure if it's connected to this or not...

[PMRpro Ambassador]

Have you any other symptoms that could be GCA?

[Mi_49 in reply to PMRpro]

I have had some discomfort with my jaw, but Ive had problems with TMJ over the years as well, just to confuse things 🙄 I've noticed pressure behind my cheekbones also a squeezing sensation around my head.

[PMRpro Ambassador in reply to Mi_49]

Hum - why can't things appear one at a time!!!!

[Mi_49]

GP rang back finally, she thinks the squeezing sensation is caused by tension, not surprising really! 😂...

[PMRpro Ambassador in reply to Mi_49]

Hope it is - but anything untoward and show her this:

ncbi.nlm.nih.gov/pmc/articl...

[Brubeck in reply to Mi_49]

I’ve had GCA for over two years. Initially, along with prolonged chills and fevers, I had a tender scalp. I recall spending a lot of time wrapped in a blanket with a bag of frozen peas on my head! When I began having tingling, zapping nerve pains shooting up my scalp, my GP rushed me in for tests. My inflammation markers were very high and I was diagnosed with GCA and put on 60 mg prednisone. All of my symptoms vanished within a day and a half. No biopsy was ever done.

To this day tender spots in my scalp are the first indicator of a flair. My former Rheumatologist told me they were tension headaches and mumbled ”scalp pain isn’t considered an indicator of GCA flair.” My new Rheumatologist disagrees😊 None if this is meant to frighten you, but to reassure you that your concerns are valid. Just be vigilant. Best of luck!

[Mi_49 in reply to Brubeck]

Thank you Brubeck, one of my first symptoms was pain shooting up the side of my head behind my right ear and my scalp felt peculia, not quite sore but definitely was aware of slight tenderness.

[Daughters2]

Have you had a blood test?

[Mi_49 in reply to Daughters2]

Yes my ESR was 78 when I was tested in April but down to 9 a week ago.

[musicality]

Sounds very much like GCA to me. Sometimes Gca tests don't always show up temp artery probs as inflammation can be patchy and gets missed. Had tinnitus, hair thinning and a host of other side effects that I attribute to the medication. Annoying now that there are new drugs that could kick PMR/GCA into touch! Obviously not every 1 is suitable for it and the cost is astronomical so only the chosen few will benefit. Remember that the replies are from each person's own experience and u should still take expert advice whilst keeping a mental note of tips from others who have been through it. No one can know how awful it can be if not had it themselves.

[Mi_49 in reply to musicality]

Quick update, I had a call from the hospital last evening spoke to a doctor who told me to take 40 mg until my own rheumy gets back to me. I'm expecting a call today.