Query gca

[Birdsong69]

Has anyone experienced gca. What are the basic symtons.

[SnazzyD]

Hello. Try this

mayoclinic.org/diseases-con...

Of course, it’s not always as simple as that because people can present with more subtle or atypical signs. Rarely, some go straight to blindness without much prelude at all. Some musculoskeletal problems can mimic GCA too. Do you think you have symptoms?

[Birdsong69 in reply to SnazzyD]

Have headache/pain heaviness over left eye, tender temple if pressed and tender upper pallet all on left side. Occasional tenderness on back of neck and along has bone. Sore cheekbones, like sinusitis. Painful teeth again all along left side. Gums/ pallet,sinus and temple is more consistently aggrivating. Can understand confusion with symptoms as they replicate many others. They found I have an infection (in blood test) as I was complaining about a toothache. However I don't want this to distract from possible symptoms of gca. On 2nd lot of different antibiotics at moment to check sinus and toothache. Just wondered if anyone experienced similar symptoms.

[SnazzyD in reply to Birdsong69]

Well, there are some here who have been treated for sinusitis instead of the GCA that it was. When you say they found infection, what do you mean. Which test was abnormal? If it was the inflammatory markers, that only tells you there is inflammation that may or may not be due to infection. To me, with a history of PMR I’d be wanting to rule out GCA first pretty swiftly.

[PMRpro Ambassador in reply to SnazzyD]

Me too ...

[Tamtan2 in reply to PMRpro]

What is the reason for wanting to know quickly about Gca. I have been pretty well ignored since being diagnosed. I’m on 20 mg fir both tmr and gca think I had a flare up all symptoms came back forum advised me to take and 5 mg last night as lumps and bumps appeared back. It was like a miracle slept all night this morning feeling well again 25 seems to suit me 20 mg not enough????

[PMRpro Ambassador in reply to Tamtan2]

Sounds like it.

The reason for wanting speedy medical advice is that once GCA inflammation starts up it can get quite bad again - and if it happens to be affecting the blood supply to the optic nerve then the risk of sight loss is very real. Just as it is at the start.

[Tamtan2 in reply to PMRpro]

Thank you, that’s most informative didnt know this. why aren’t we not given this information it’s very important that we know that this inflammation is kept as inactive as it can be. You are so knowledgeable I feel I trust your view although I feel my brain I’m starting to take more and more in of this disease and I can put my own thoughts or actions on myself with the confidence gained from this forum . I’m going for bloods to morrow I feel strong enough to question ruemy nurse about lots of thing wether I believe it remains to be see. 🙏🏽

[PMRpro Ambassador in reply to Tamtan2]

You will learn with time. But at the moment the important factor is that the inflammation needs to be kept suppressed - for all sorts of reasons which you will get to know eventually - and you know that by you not having symptoms. Symptoms equal inflammation. Keep them down.

[SnazzyD in reply to Birdsong69]

Is there any other evidence that there actually is a tooth or sinus infection? Did the first lot of antibiotics work at all?

[sara44 in reply to SnazzyD]

I went through a wealth of testing ct dentist xray diagnosed with tmj finally ran labs my markers where sky high immediately started on prednisone 40mg symptoms gone in 3 days they only returned when by optho reduced my to much to fast and I had a horrendous flair listen to your body when it comes to tapering slow and easy

[Clergyman in reply to Birdsong69]

Poor you. For what it's worth I had all your symptoms plus tender hair, that felt like pins and needles when touched. I stupidly self-diagnosed all this as sinusitis and left it far too late going to the doctors. Fortunately for me he slapped me straight on 50mg steroids while tests were done. And am I thankful that he did. 18 months later I am close to coming off them, but I'm not holding my breath.

I wish you well.

[Birdsong69 in reply to Clergyman]

Thanks. Had ultra sound by rheumatologist/GHA consultant and no trace of GCA . So back to either 12.5 or 15mg whatever suits. Here goes. Headaches reduced after 2 days on 45mg given by rheumatologist to keep me safe whilst fast tracked 're above appointment.

Good luck and keep safe

[PMRpro Ambassador]

More to the point - have you got symptoms you are worried about? GCA is a bit like Covid-19 in that not everyone gets the same symptoms! If you tell us, we'll tell you if it sounds suspicious

[Birdsong69 in reply to PMRpro]

Hi, fast tracked to have ultra sound by rheumatologist/CHA consultant. Was given upgrade to 45 mg steroids over 24 period to keep me safe until got above results. Ultrasound was all clear. So will drop down to original 15 mg ad see how it goes.

Take care

[DorsetLady PMRGCAuk volunteer]

Mostly, but not always, GCA pain is bilateral, not just on one side of head/face.

This is another link to GCA - Table 1 gives details of symptoms - lrcplondon.ac.uk/file/1597/d...

[Birdsong69 in reply to DorsetLady]

Information gratefully received.

[Carriemetz]

The old stagers on here will give you lots of info links that will help, but everyone’s different, and no one’s GCA is ‘typical’ seems to me. I had low fever and flu-like one-sided headaches for a couple of months and dragged myself to surgery triage twice (“ it’s s virus, take paracetamol”) before I suddenly had three of the cardinal symptoms over one week - strong, pulsing headache, deep-seated, powerful jaw/tongue pain, and, that weekend, strong double vision. Went to triage on the Monday, clever trainee GP sent me to Hospital same aftn, biopsy wed. GCA.

“Ooh bit untypical, your progression” sd nice rheumatologist. “It usually comes suddenly, not over 8 weeks.”

Well, it did ‘come suddenly’ in the end! But I’d like to bet most shows itself in dismal sub- emergency symptoms, (“virus” ) like mine, and this ‘progression isn't in fact that unusual!

I hope you are able to get some answers very soon and begin steps on the road to recovery. Stick with this forum - it’s been a godsend to me over the last 18 months. All best wishes, Carrie

[PMRpro Ambassador in reply to Carriemetz]

I agree - I bet most patients could look back and identify similar "things", especially with PMR.

[Birdsong69 in reply to Carriemetz]

Thanks for your feed back. I am contacting my doctor 're gca symptoms. Do hope all goes well with you 're biopsy and they get you on the relevant medication. Keep me posted. All the best.

[SnazzyD in reply to Carriemetz]

Oh yes, I had plenty of hindsight symptoms before the apparent 48 hour emergence.

[Birdsong69 in reply to Carriemetz]

Hi, fast tracked to see rheumatologist/ GCA consultant. Was given dose of up to 45 mg over 24 he period to keep me safe. Ultrasound all clear so reduced back to 15mg a d see how it goes.

Best wishes

[Tahiri]

I had been abnormally fatigued for some considerable time , when I suddenly had an extremely tender scalp , and an excruciating headache. I then noticed a blue vein on my temple , which I’d never had before , and which was tender to touch. My GP immediately prescribed 40 mg Prednisolone (October) , took blood tests and phoned an optician to arrange an urgent examination. My eye tests showed that my sight was unaffected but my blood tests were abnormal. The Rheumatologist I saw later , noticed wasting in one leg and had no hesitation in diagnosing GCA. She said that , as I was already on steroids, that a biopsy was my choice , but she was certain of her diagnosis. I am on 7mg at present, reducing to 6.5 next week. I hope this helps.

[Phed]

It took 3 weeks and 7 doctors to finally discover I had GCA, they all missed the point of the horrific headaches, couldn’t brush hair as my scalp hurt so much, and loss of sight in one eye for a few seconds, blood test did show up infection but they said it was a tooth problem, then sinus trouble and even ear problem, luckily for me the last doctor I saw knew what the symptoms were straight away, I’m amazed at how few people know about GCA when going for a medication review recently with the pharmacist in our doctors he said was it a virus luckily there was a young trainee in with him who shot him down in flames and took over the appointment I had. Once diagnosed I have had brilliant treatment from hospital and doctors it’s just getting the right person to diagnose it the first place, hope you manage to get it sorted out soon.

[Tamtan2]

Same here I had all the symptoms of Gra and PMS tenderness in my head could not comb hair or wash it lumps over my head like big thick veins on head, been on 20 mg steroids few weeks now PMR fine GCA still a little sore but I can tolerate it. To day been a goid day although diagnosed yesterday with sliding hiatus hernia after coming of alendronic acid. Going to have it repair. Take care. 🙏🏽

[Narducci]

There are quite a few different symptoms of GCA.

Terrible headaches that painkillers do not touch, tender scalp, throbbing pain in one or both temples, aching in neck/shoulders, general fatigue, hazy eyesight.

Important diagnosing is checking blood sample for ESR and CRP, showing level of inflammation in the body.

So important to get checked if you have any or all of these symptoms - you can lose your eyesight if you delay!

[Telian]

Mine were right sided headache like no other - GCA headaches do not respond to any painkillers. Tender scalp and generally unwell - flulike.

I was treated for migraines for many years but when I started with R sided facial numbness was sent for an angiogram - all normal - then to maxillo? facial for suspected jaw misalignment- all normal - then to TIA - all normal but reiterated possible migraines.

The head worsened - felt like carrying a heavy weight on the affected side - and I felt so ill. I suddenly lost the sight in one eye and it lasted hours - wrongly I went to bed but went to the doctors when I woke up, even though the sight had returned and he fast tracked me to Rheumie, as he knew about GCA.

GCA was confirmed via ultrasound and raised inflammatory markers and prescribed 50mg Prednisolone - within six hours felt like a new person.

Because of the risk to sight GCA is classed as a medical emergency and you must go to hospital to get it ruled out. I was lucky to regain my sight.

[PMRpro Ambassador in reply to Telian]

Just want to add - ANY loss of vision, transient or not, MUST be reported to a doctor immediately and acted upon, even if it means calling 999. It can also be a symptom of a stroke or TIA (mini-stroke) - so needs immediate medical investigation.

[Telian in reply to PMRpro]

Didn’t know that - if I hadn’t felt so ill might have left telling GP until I saw him next. Thanks.

[PMRpro Ambassador in reply to Telian]

We had a lady years ago who had experienced 20 minutes of visual loss while on the phone to her daughter, they talked about it!!! She was lucky - it was GCA and she didn't lose her sight. But it wasn't until we had a fit on the forum when she told us that she went to the doctor!

[Telian in reply to PMRpro]

I know - People don’t understand and think it won’t happen to them!

Look at my neighbour Essex........untreated PMR and the rest

is history.

He can’t talk to me about it without getting tearful as he says ‘ I just didn’t understand’. Because I looked so well it was conceived the illness wasn’t that bad!

[PMRpro Ambassador in reply to Telian]

So sad isn't it? Bit like some of the younger people who dismissed Covid-19 as a bit of flu - not if your grandad gets it isn't. And sometimes, not if you get it either ...