I thought it would be a good idea to have a collection of our own experiences with GCA symptoms before being diagnosed so that when people want to know there is a simple way to provide a collection of experiences quickly.
Please write a reply saying how YOUR GCA started. The symptoms, how long each lasted if you can remember and how your doctor reacted. Did they pooh-pooh the symptoms, tell you it was "not the right sort of headache" or "this isn't happen in GCA"?
And please - could we keep this just to the stories with a minimum of other comments. Remember this will be a reference for others who are new to PMR and GCA.
Thank you all.
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I had the strangest ,almost burning , sensation on my scalp, but only when I touched my head. Hair brushing was a nightmare. My headache was the worst I had ever experienced, The GP said it was classic GCA.
On 15mg of pred for PMR. Slight headache in right temple, grey foggy patch in centre of vision lasting about 2 minutes (same as my migraine would start) about two hours later felt like both my eyes had been pulled out and twisted, very painful, phoned doc, frightened reseptionist by telling her it could result in irreversible blindness. Doc phoned back about five minutes later with instruction to take 60mg pred stat and 60mg next morning and did I have enough pred. And if it happens again go to A&E immediately. Didn’t have jaw claudication until the following day. Receptionist will phone you back with an appointment for tomorrow morning and the rest as they say is history.
Think this is a great idea no one warned me about exactly what visual symptoms I might experience.
I was taking NSAIDs for arthritis in my lower back, and had an old neck injury, so ignored what were probably early signs. The thing that sent me to my GP was jaw and tongue claudication. I then when questioned said my forehead felt sunburnt, and I had started waking at around 4:00.am with a bad headache and night sweats. I had imagined other reasons for many of my symptoms, but fortunately my GP was on the ball and within less than a week bloods were back and I was referred to our local hospital as an emergency. Had biopsy which was negative but my Rheumy doctor has said he is certain I have GCA. It turned out all of the above symptoms, plus my neck and upper spine pain; occasional pain in my calves, hip and ankle, when walking were GCA related. All gone thanks to Pred. Hope this is useful.
We've been asked not to comment or chat on this post, rather keep it as an informative source of symptoms, however thanks for the elaboration opportunity, my main tests were ESR and CRP both of which were over 100. X
Strangely enough,toothache ,sore throat and weight loss, been palmed off for months with throat sweets and paracetamol.Had several hospital appointments,it was Ear Nose and throat that diagnosed me as he was the only one who took bloods!
Things moved fast after that within three days had biopsy and predisolone.
Fourteen months on down to 4mgs but it hasn't been easy.I have since developed
osteo arthritis in my hip which I thought was just withdrawal pain from Preds. however seems I need hip replacement? Hard to believe as I have no history of joint pain .
Shooting like taser pains in head. No jaw pain or headache. Diagnosed 6 months later PMR , ( CRP 126 ESR 70) put on 10 mg Pred. Claudicatiin in Right leg, faint or no Pulse detected on right arm. Vascular surgeon diagnosed severe blockage and probably vasculitis. Pet scan, cat scan diagnosed GCA - LV. vasculitis. 60 mg pred in October. Tapering , down to 30 mg (I am going very slow).
Terrific team of rheumatologists , taking good care of me , and pretty ready to listen to me and my body. ( 3 out of 4 of them :).
Had shooting pains in head and aching neck for some weeks. During this time had a cataract op but no notice taken of head pains. Eventually small lumps appeared either side of my eyebrows. Saw GP and that day was put on 40mg Pred. Biopsy followed after two days. Am now on 5 1/2 mg after three years but never had a flare.
Good idea. Just heard about someone today with headaches and jaw claudication who is now blind in both eyes
Me severe stiff neck, physio made it massively worse. Followed by a relentless headache, I have had headaches ever since I have had a head but this went on for five weeks. I had to sleep with ice packs and my arms were so weak I couldn’t pull myself up the bed. GP husband and his partner didn’t help, I thought I had a brain tumour. Spoke to senior colleague and he asked all the usual questions about scalp tenderness and eye problems and I had none. Had one episode of claudication when I ate meat. My blood tests were CRP 189 and ESR 120
Told to start on 40mgms Prednisolone and symptom free in a few hours
It’s important to realise that some GPs never see a case of GCA in their whole career so it’s essential that we are persistent, not everyone has the same symptoms.
Oct. ESR tested, deemed satisfactory, so PMR discounted by GP.
Nov. Advised GP could not lay on side to sleep. (Left shoulder worse than right). Frozen shoulder diagnosed.
Dec. Referred to physio
2011.
Jan-Apr.Physio treatment for shoulder. Naproxen & Co- codamol prescribed
April . No improvement with physio so referred back to GP for cortisol injections.
April - December. Total of 3 injections given. Increasingly fatigued - according to GP due to age and caring for husband. In between injection, which became less effective each time, shoulders so bad took about 10-15mins to turn over at nights
2012
February. Pain moved from shoulder to nape of neck and tender scalp plus excruciating pains vertically down face. GP attributed to trapped nerve from frozen shoulder. No enlarged nor painful temporal artery.
March. Pains moved into jaw when eating - teeth checked. Prescribed Amitriptyline to aid sleep and increasing pain.
April 10. GP appointment due to blurred vision in right eye - when asked if any connection to other symptoms - told NO
April 14. Complete blurring in right eye. Attended A&E. - GCA diagnosed. ESR 58; CRP 26. Commenced 80mg Pred.
Luckily saved left eye.
In remission since Sept 2016.
My case is extreme, and 8 years later I would have hoped things have moved on, but it would seem in some places it hasn’t!
Mine started with an unusual headache at the back of my head which prevented me from going to sleep, even when I lay on my front. The most unusual thing about the headache was that it seemed to be just under the skin, rather than inside my skull like the other headaches I've ever experienced. I then started noticing it at all times, not just at night. It tended to concentrate in the area round my right ear, although I felt it all over the back half of my head. It was slightly throbbing and very persistent, although not usually severe. These symptoms went on a couple of weeks before I went to the GP. When I did, he glanced but didn't examine me, and said it was because of 'problems with my neck' and he'd arrange for me to see a physiotherapist, but that never happened I'm glad to say. A couple of weeks later I started PMR symptoms and I was finally diagnosed four and a half months after my first GCA symptom. I would add that I only very rarely had jaw claudification and I had no eye problems.
My left eye had serious flashing lights on a Saturday afternoon around 4 pm. I could not see out of the eye for a minute or two. As I had had silent migraines with flashing lights across my eyes I ignored that. On Monday evening it happened again. Lasted about a minute or two. I ignored that. On Tuesday at lunch my jaw was locked and the top of my head felt like someone had hit me with a hammer. I went to emergency. The doctor on duty said I think you are going blind and started blood tests. He called the local stroke clinic and spoke to the neurologist. They sent me home saying he would call me. Wednesday morning no call so I went back to emergency. The doctor on duty took me in, looked at the blood tests and started 1000mg solu medrol prednisone intravenously. I had that three days, in a row. Then started 60mg orally. I had only tiny headaches in the few months before and after diagnosis. Not severe. I had a biopsy two weeks post my first day in emergency and the GCA was confirmed. Now 6 months later, 20 mg for the month of April and all results being good, 15 for 6 weeks following.
I had about 6 weeks of bad early morning headaches, not helped by paracetamol. Sometimes they were down one side or over the top of my head or at the back, but always on waking or they would wake me. They then sort of hung around for most of the day, very strange but I have always had headaches and used to have migraines so I probably ignored them for longer than I should have. I was also really headsore and felt like I had flu all the time. I did go to the GP a couple of times and was sent home with treatment for sinusitis..steam inhalers, antibiotics. I was also told to see my dentist as I had toothache and jaw ache, the dentist gave me a guard to wear at night but wasn't convincing!! Luckily I didn't have any visual symptoms. But I tried again at the GP and saw a young locum who wanted to try something...he put me on 40mg Prednisolone and said to return in 2 weeks. He thought it might be temporal arteritis, which I had never heard of! And Boom!!!! The next morning I woke up with no headache! I just couldn't believe it. The jaw ache and head soreness disappeared soon after too. I never did have a biopsy as I had been on the pred for about 4 weeks when I got my rheumy appointment. My own GP told me I was his first case, he'd never come across it before. Thank goodness for locums, a fresh pair of eyes so to speak. This was just over 4 years ago now.
I was post shingles (chest & back) when flu like symptoms started. Sore throat,ear ache then toothache & a headache like I'd never experienced before. The headache was sharply electrical rather than throbbing & seemed to go from ear to ear. My back teeth throbbed so the Dentist was my first port of call! X ray taken & no dental problem! Scalp was sensitive too & I felt rotten. Days later Doc put me on the usual powerful painkillers but they did nothing for the pain. A week later follow up appointment & Doc phoned the Eye Dept at the QE Hospital for an appointment & prescribed 40mg pred/day. Within 6 hours there was great relief from the head & ear pain.
The hospital consultant tested my eyes,listened to my experience & booked me for a Temporal Biopsy which came a few days later. The Biopsy proved positive GCA & I remained on 40mg for just over 4 weeks. This was May 2017. I am currently on 10mg.
I was fortunate with a prompt Doc referral to the eye consultant who listened & the Biopsy showed up the GCA.
I was diagnosed with PMR in December 2018, however 4 weeks later I had a sore scalp (at back of head) and really bad jaw claudication (No big headaches or visual disturbances) GCA was suspected immediately and I was increased from 15mg pred to 40 which worked for a week however got more jaw symptoms and pred increased to 50mg which worked. Currently reducing and down to 25mg
My first symptoms were in the jaw. I couldn’ Sing in church. Then pain above the ear and eye and tender scalp. A & E as it was evening. Bloods done on the spot plus 60 pred. Followed by biopsy.
I only had Jaw Claudication. No tender scalp or headaches. I was given high dose of Pred straight away, bloods were sent off with results 3 days later which showed very high ESR (112) and a temple biopsy a few weeks later confirmed my fast acting doctors suspicions. I also have PMR
I had been diagnosed with PMR (my GP agreed after a few visits this was what it was) with all the 'classic' stiffness, unable to raise hands above head. painful hips, shoulders, neck etc A few weeks later headaches - not really the throb type - felt more like my entire head was inflated and about to burst and would worsen overnight - very sore face around eyes and sinuses - not responding to painkillers or antihistamines (I thought first 'allergy). Also had some small bright blue flashes in my field of vision and some occipital ache as well. Agreed by GP this was likely GCA - and as already on Pred for awhile so didn't opt for a biopsy - and no ultrasound available for this in my part of the world. If my dose isn't sufficient I now develop first throbbing temples. Now around 2-3 years duration ( as probably had nebulous symptoms before diagnosis for a while) with PMR/GCA and just coming out of a 2nd 'flare'
Went to GP because of very tender scalp, on the apex, couldn't bear to brush my hair. Lost about 2 stone in previous 18 months, I wasn't trying to lose weight but it was assumed to be a good thing! Also developed all sorts of food intolerances. Had claudication of right leg in 2 months before, dismissed as a muscle strain. Fortunately very experienced GP did recognise it, ordered immediate blood test, made courier wait for sample! Come back tomorrow he said, ESR 82 gave me 30 mg of pred and faxed hospital for biopsy. Went home with pred and whilst sitting at table considering when to take it lost vision in right eye for a couple of minutes. So I took it!
No response from hospital so GP sent me to eye clinic 3 days later, ESR in 40s, put pred up to 40mg. Hospital produced appointment 5 weeks later, by then too late for biopsy.
Hospital rheumatologist said I had the wrong sort of headache for GCA but decided I had PMR , sent me for tests for cancer MS etc. Neurologist said GCA strong possibility. Still taking the pred, extreme exhaustion, spent half day in bed. Also had tongue and jaw pain when chewing.
Following year had sepsis, spent 5 days in hospital. Shaken husband thought it was time for second opinion as I nearly died from side effects of treatment for disease I "didn't have". Top rheumy seen privately said it couldn't be anything other than GCA.
Then developed cataracts, almost blind in about 2 months.
Next appointment at local hospital rheumatologist had retired. Her replacement still sceptical but impressed by top rheumatologist's opinion. Last October, nearly three years on sent me to Oxford rheumatologist who confirmed I had GCA, now in remission, remaining head sensitivity down to damaged nerves, prescribed pregabalin, which helps a bit.
Now I have got osteoporosis and multiple spinal fractures probably from the pred, no initial DEXA scan unfortunately. I have taken Alendronic acid or risedronate sodium and adcal D from the start.
Down to 10 mg of prednisolone with help from steroid sparer. Stuck on this dose because of bronchitis, have added broken rib to collection from the coughing. Have at last been referred to the fracture clinic, a year after first fractures.
I was diagnosed with PMR in June 2016 but like many people had been having symptoms for a number of years and had 4 referrals to physio for the different pains, none of which helped. Prednisolone was prescribed and pain free within 5 hours.
The GCA was diagnosed in September 2016 in A&E.
I had an irritating cough for about 18 months, not a sore throat, just frequent coughing for no apparent reason which I discovered is a known symptom due to inflammation in blood vessels.
For about 3 weeks I had a mild headache which travelled up from the nape of my neck to my forehead like a wave. It was never severe, was just under the skin, each wave lasted about 10 seconds and I had about 10 an hour.
My scalp was extremely painful, not tender, painful.
I really struggled with the water drops on my head in the shower, I could not go out if it was windy as the wind lifted and moved my hair.
I had intermittent tinnitus in both ears and pain behind and inside my ears especially my left.
What finally drove me to A&E was pain in my temporal arteries and my left one was bulging also left carotid artery was more prominent and obviously pulsing.
I had also lost weight, about 5 kgs, not a great deal however I was down to about 45 kgs and looked very gaunt but feeling too unwell to notice.
I remember the fever and hot sweats mostly at about 8-9 pm.
I was in A&E for about 5 hours, it was a busy evening/ night and left about 2am.
I was cared for by a medical student, who repeatedly described my condition as arthritis even though I corrected him a couple of times. Fortunately I had by this time had 3 months of PMR, was a recently retired nurse and been a member of this site so I knew exactly what I had and what to expect.
It was the first time the medical student had come across this condition so in no way am I critical of his lack of knowledge however it was disheartening to see the behaviour of some of the waiting patients and the length of time it took to deal with rudeness and the extra chaos caused.
Time the consultant could have spent in explaining.....
I had what I now know were undiagnosed PMR symptoms that came on slowly over almost a year. CRP ESR markers were slightly raised in a couple of blood tests over that time.
By December I had bursitis in both hips, couldn't turn over in bed, had sore thighs, calves, shoulders, neck & top of arms. I was walking with sticks. I'm not sure how many of these symptoms are PMR & how many GCA. I had also lost a lot of weight.
On Christmas Eve I had 1 glass of bubbly & the next day had a low grade headache behind 1 eye. ( I thought it was migraine due to the bubbly). The headache didn't go away & by 8th January my teeth & jaw were also sore & I was unable to eat until after midday when the pain reduced a bit.
I had a very tender scalp. The headache was always low grade, but always there.
I went to the doctor on 9th Jan who diagnosed PMR & GCA
Just to note - PMR can be classed as a symptom of GCA but usually there are other symptoms for a diagnosis of GCA to be suspected. Weight loss is more likely with GCA than with PMR.
My GCA started with an ache in the back of my neck. I’d been using a screen quite a bit and for the first few days, I just put it down to that. Within a week, it was much worse...up into both sides of my head, but not over my eyes. Putting makeup on, I noticed I had raised veins in my forehead on either side. By the evenings, I just couldn’t do anything with my head to get comfortable.
I couldn’t get a GP appointment. On a couple of evenings I sat by the phone thinking to call 111 but didn’t. I finally I got a GP phone appointment...the doctor said to see how I was after the weekend and if things didn’t improve, to go see her the following Tuesday...and in the meantime, maybe see a chiropractor.
I saw a chiropractor and the pain in my head when he manipulated my neck was unbelievable. I feared I might pass out driving myself home.
That weekend, I was getting desperate. My jaw felt tired whenever I chewed anything and my ears weren’t happy either. I had a tremendous sense that something was seriously wrong and I felt so depressed I even took out my will and wrote on the back the type of burial I wanted! Painkillers weren’t touching it. I started to Google. I’d had very few other symptoms before the neck and the headache started. I had lost 3/4 kilos but I’d been eating healthily and exercising. I’d had had a few mouth ulcers and the odd cramp in bed at night. I’d also had a painful squeezing feeling ( scary but lasted only a minute or so) in my neck which had woken me a couple of times in the night. In hindsight, my mood had also been a little depressed for a number of weeks.
Anyway, I googled and came across GCA. I’d never heard of it but it fitted!
I finally saw a GP (after then two weeks of trying to get an appointment) and I told her I reckoned I had GCA. She thought it highly unlikely...very rare and I was too young. Rubbish! I was 59. She took bloods. Next morning, I had 4 missed calls from the doctors surgery wanting me to call them back urgently. I went back in immediately, she agreed I probably had GCA and I was on 40mg Pred that evening, 40mg the next morning and been on them ever since. Ten days after seeing the doctor I had a temporal artery biopsy which confirmed GCA.
After just over two years, I’m now down to 11/2mg and all fingers crossed!
October 2014 - I had a sore jaw, couldn't chew for very long or open my mouth very wide but put it down to having had a tooth extraction six months earlier. Had a sore right shoulder which I put down to the way I was holding my tablet. Five months later I had a headache which wouldn't go away. My scalp was very tender. I was losing weight. I was also having a few night sweats. Saw a GP after 8 days who told me to take stronger pain killers. He did not do anything other than telling me to follow the pencil. Later I discovered that he made a note in my file that it was not typical GCA. I was so angry I started searching the internet and discovered GCA. I had my eyes checked and showed the optometrist the swelling but she said it was in the wrong place for GCA. I saw a 2nd doctor the following week who was still doubtful (headache was still with me) although by this time I had a swelling at the side of my head. She took bloods and the next evening I was in A&E and put on 40 mg of steroids. The 3rd doctor the following week upped it to 50 mg when I told him about the jaw problem. Turns out if I had seem him initially, he would have diagnosed it right away having treated it three times during his career.
At least a year in run up to main eventaged 53 - Very intermittent tugging feeling in temple, sensitive scalp when brushing hair, bouts of fatigue put down to demanding new job, tinnitus, waking in night with numb arms like I’d slept on them both, hard skin on top of my toes, dark rings round eyes. Ectopic Heart beat when lying on left. Waking in night with right eye only seeing grey, but gone by morning. Hot flushes had since early menopause from chemo 13 years previously getting worse especially at night.
Last few months - increasing fatigue, daily niggle in temple at work put down to phone use, croaky voice, morning pain in base of scull. Started to look pale and ill. Waking with cold head so took to wearing a hat in bed. Kept buying different pillows because head and neck felt uncomfortable.
Last few weeks - waking with base of skull pain every day but gone when got to work. Black spots in vision when cycling hard, waking at night with head pain. Niggle in temple still only at work but worse, so asked for a non-hands free phone. Craving chocolate in evenings. Hot flushes getting even worse.
Last week to A&E - Niggle in temples didn’t go away worse on right, felt generally unwell, black spots worse when cycling, pain every night in scalp and neck. Croaky voice worse. Ectopic heart beats bad at night such that could not lie on left side at all.
2 days before - Noticed raised vein to right of my right eyebrow, scalp tender all the time when touched. Morning pain worse but always went by breakfast. Right temple felt like mild burn under skin. No pain killers worked.
1 day before - couldn’t bear sound of crowd on tv rugby, felt distant, felt weird in the head, niggle in both temples persistent burning of skin (thought it might be shingles), couldn’t sleep.
Night before - Had dream when I did sleep of voice telling me to go down and look at my garden because I won’t be able to see it any more. Burning in temples now distracting and neck stiff. Felt very spaced out. Had light bulb moment (only just now) when I thought what if a patient came to me with this? Yes, I’d get the GP down ASAP for GCA. Oh.
The day - Feeling of calm foreboding I get when something very bad is happening with my body. Insisted sitting in car to take my daughter back to Uni (needed a transition time because I felt my life was going to change). Got back at lunch, my husband took me too out of hours GP. Diagnosis in 10 mins. Called ahead to A&E. Burning all consuming.worse on right but also on left. Sight starting to become increasing tunnel vision so I was looking down two loo roll tubes and light fading. Hearing dull and ringing. Doc picked me out of queue and was given 60mg Pred. In two hours miracle cure, all ok. ESR 16 (high for me usually 4), CRP normal, Head CT normal. Eye check done 4 hours later ok. TA biopsy done 8 days later negative.
I have always been reasonably healthy, I was about (74) at the time when things atarted going pear shaped. Looking back it was about 6 months when I was having terrible hot sweats and then going cold,really really sweaty in bed. Then wham the headaches appeared like it hit me so terrible i had to see the Dr. He could tell I was so in distress on the phone and saw me straight away on a Sat. morning. He diagnosed me straight away and gave me steroids straight away, I saw Rummie same week. tests, biopsy, and all these tablets straight away, I really wondered what was happening to me. The rest is history, 6 years on still here and struggling with between 2mgs, and feeling good. This week I've got the headache back and was on 7 yesterday. All these things are really long stories, hope this helps you.
Began by feeling v. tired (previously very active, played tennis, golf, dog walking), then for a month felt very fluey, lost weight, then awful headaches started, thought it was sinusitis, took antibiotics got worse, saw doctor four times over 10 days as felt so ill plus awful headaches, told I had stress, cluster headaches etc, eventually my husband took me to A&E, admitted and diagnosed within 24 hours - to be fair I had no sight problems.
Started with neck pain so was offered physiotherapy and painkillers. After 2 weeks of no improvement had x-ray which showed arthritis in three vertebrae. Beginning to feel very tired.
Then quickly, within the next 2 weeks, an array of symptoms (looking back, GCA and PMR both I think) came on together:
-tender scalp and temples
-stiff jaw (difficult to open for eating and pain with chewing) and tooth-ache.
-eyelids loose and drooping and yellow-ish
-mild headaches
-bi-lateral pain shoulders and hips and knees
-sweating at night (had to change t-shirt twice nightly)
-loss of appetite (resulting in sudden weight loss at least 5 kilos)
-very stiff in the morning: difficulty getting out of bed, turning over at night, walking upstairs (couldn't bend knees). By afternoon I could walk better.
-extreme fatigue and depressed mood: spent mornings in bed basically
After a week like this (I thought I had a kind of 'flu ), I researched my symptoms on internet and found that GCA/PMR seemed to fit. I took the list to my GP when I got back to France and happily for me she reacted instantly (although she had no experience of other cases) with blood tests which confirmed the GCA/PMR diagnosis. CRP was 38.2
Before symptoms onset I was active and healthy but had been through a long period of much stress.
I had a pain in my jaw for a couple of years. The gp and I thought it was arthritus. PMR forced temporal lobe biopsies and found the GCA. I think I had started to have some funny things going on with my vision but I really didn't take much notice. Didn't have the tender scalp or many headaches at all.
12.10.17: Awoke with tension headache in occiput (base of skull). Neck stiff
19.10.17: Neck still stiff. Sore throat developed into upper resp tract infection but little phlegm. Dreadful cough. Fascial contortions coughing make jaw ache.
24,10 17. Spine really tender to touch. Scalp tender. Neck movement very restricted. Pins and needles sensation in face but only upper right quadrant with numbness. Headache in occiput. Emergency GP visit as feeling so awful. Told it was a virus.
30.10.17: Head, face, neck, bache and R sciatic nerve really sore and stiff. Have to wait several weeks for a GP appointment on 21st Nov!!!!!
4.11.17. No improvement. But headache gone Still cough now phlegmy.
8.11.17 Accupuncture helping a bit but neck still so sore and stiff.
12.11.17. Cough bad again. Sinus pressure and headache again.
15.11.17. Backs of knees become painful. Shoulders becoming stiff. Still walking dog twice daily, housework. Refusing to give in although beginning to think this could be PMR (father had it).
21.11.17 GP visit at last. Pain from top of spine into occiput radiating to both ears. Pain and stiffness in pelvic girdle and groin. Shoulders ok now. Leg muscles achy. Able to walk but agility terrible. Difficulty bending to tie bootlaces. Tendons of legs feel inflamed. Knees puffy. Difficult getting up from the floor. general loss of appetite. Weight loss 7lbs. Increased thirst. Very stiff and sore on waking, need a hot shower to loosen up. Heat packs and Ibuprofen make life a bit easier but minimal effectiveness.
GP immediately Rx prednisolone 30mg and emergency blood tests.
Results within 24 hours showed ESR 108 and CRP 142. GP amazed that I was still functioning with such a high level of inflammation.
Marked relief from symptoms within 24 hours.
Consultant appointment on 4.1.18. Bloods taken prior to visit. ESR 12 and CRP 8. Dx PMR with possible GCA. No biopsy as I had been taking Pred for nearly 6 week. Stayed on 30mg
Today: No relapses. Some hiccups with tapering. Currently 5mg ESR 10 and CRP 5.
2 weeks before had prickly eyes, mild headache, dripping nose, neck ache, mild earache & beginnings of sore throat (with hindsight, some difficulty chewing. Saw pharmacist . Benadryl suggested for hay fever.
1 week before had GP appointment as symptoms worsening. Prescribed Cetirizine Hydrochloride and Beconase
5 days before unable to get GP appointment so taking 6-8 Paracetamol and Ibuprofen to dull pain
4 days before insisted on seeing someone. Surgery Nurse diagnosed sinusitis and prescribed Dooxycycline.
3 days before vomitting all day. Very bad headache and poor sleep.
2 days before diagnosis, headache now severe and stil vomitting, spoke to GP who suggested Norovirus and stop antibiotic
Diagnosis. No improvement , but felt much worse, but no longer sick. Phoned 111 and had house call from area locum GP. He listened! He diagnosed GCA, sent blood test to area hospital and prescribed 40 mg Prednisolone and left a week's supply. Headache lifted after a couple of hours. He phoned back with blood test results - 91- which confirmed diagnosis
2 days after GP phoned to discuss diagnosis and prescribed regular 40 mg Prec daily, Adcal, Alendronic Acid and Aspirin (already taking Lansaprozole) Referred to local hospital to see Rheumatologist.
19 days after saw Rheumatologist who organised biopsy next day. Good sample, confirmed diagnosis.
26 days after , 1 week after biopsy, feverish & return of symptoms. Saw GP and prescribed Flucloxacillin for biopsy infection and Pred raised to 60 mg
Reduced Pred as advised. Blood test results good. Had Dexa Scan after 6 months, which I had requested, that showed mild osteopenia. Rheumatologist pleased and advised on reducing steroids, to cease Adcal but continue Alendronic Acid until 5 mg reached
2 years after diagnosis, I have slowly reduced Pred. Possible flare after a year when I fell, broke a wrist bone and loosened a front tooth -this could not be removed and could not have implant due to Alendronic Acid. See Rheumatologist 6 monthly and he is happy to leave me to reduce Pred at my discretion. Had left arm cramps one night for several hours that went with Cocodamol - I worried about possible heart problems, but recovered quickly.
I joined a PMRGCA Group, which has been most helpful. GP will not issue more blood test forms. After 2 years, I am taking 4.5 mg Pred, feel well with no obvious GCA symptoms and all staying well, see Rheumatologist in 4 months. I take Vitamin K, Calcium, Magnesium (still have sleep problems) and have lost a stone after cutting right down on carbs - porridge for breakfast, salad and sardines drained of oil most days
For about three weeks I had a stiff neck, tenderness at the back of my head and left side earache. I was driving long distances and thought that was the reason. Then I began to feel like I was getting flue. Not unusual for me because i had an extremely stressful job and often got tired and unwell. Then I got the burning , pressure pain in my left temple and my jaw seized up. After 2-3 days of almost sucking soup through a straw my OH made me see a doctor. (previous experience of occasions when I walked about and didn't tell him I was ill, until my ectopic pregnancy ruptured, appendix ruptured and I ignored symptoms of a heat attack-- I don't like doctors).
I also lost some weight rapidly but I was dieting and running so I have never been sure if that was GCA. I put it back anyway with the PRED.
The GP was amazing, she took bloods, then rang me (without waiting for the result) and said that she was worried and could someone collect me a handful of tablets which I must take immediately and she rang a few hours later to see how I felt. She arranged an urgent Rheumy appointment and she rang me every day for 6 days and saw me monthly for 6 months. Then she left the surgery and now no-one follows me up!!!
In August 2016 she experienced severe pain in the occipital area of the skull (back of the head) and some claudication in lower leg muscle. GP initially diagnosed diskitis but with esr and crp rising quickly he contacted the rheumatology department who advised probable PMR and prednisolone 20mg was prescribed and an appointment requested with the rheumatology department. With no improvement in the symptoms we made a private appointment with the rheumatologist (no rapid referral pathway at that time ! ) and despite my asking if it was GCA was assured it was not. No clear diagnosis was made. The prednisolone was increased to 25mg and the symptoms did improve and my wife slowly reduced the dose as advised by the rheumatologist.
In January she experienced claudication of the jaw muscles and once again we went the private route (there is a fast track now after we rattled a few cages) and this time the consultant admitted that my wife was suffering from GCA which was confirmed by finding painful areas on the scalp. The prednisolone was increased to 60 mg and she has been slowly decreasing since with no recurrence of symptoms and normal esr and crp (until last couple of weeks).
We also arranged an appointment with Professor Dasgupta who carried out an ultrasound examination (the temporal arteries were fine but signs elsewhere) and he confirmed the GCA and advised reducing the prednisolone which he felt was too high at that time.
(Now she has a heart problem which may or may not be related and we await an appointment with cardiology!)
Was diagnosed with PMR in Nov 2015. Prior to this had lost weight, felt flu like, and just before taking Pred had had a pain behind the left eye as well as the usual PMR symptoms . After being prescribed Pred for PMR everything took a general course, although I constantly had painful glands on the left hand side, until Jan 2017. On 10 mg of Pred I started to get pains at the back of the skull and sharp,searing pains ( like hot rods) in the left hand side of my head, also very swollen, painful glands and slight ear ache on the left side. Went to see GP and said I was concerned about the start of these head pains( couldn’t call them just headaches as I was very used to headaches and this was nothing like I had experienced before)My CRP on diagnosis of PMR had been -1 and my ESR had been 16. When I was experiencing head pains my CRP was 1 and my ESR was I think ,11. My GP looked at temporal arteries and said that they were not raised and she would be very concerned if she thought I had GCA and I hadn’t! I went back about another three times, each time slightly raising the amount of Pred until I was on 18mg. I couldn’t sleep with the head pain and was very distressed, I did’nt though have any problems with my eyes. I therefore went to see a Private Consultant Rheumatologist and he confirmed that I had cranial GCA. I went onto 21 mg and this seemed to control the headpain.
He wrote to my GP.She never accepted that I’d had cranial GCA and used to say” what are we calling this condition now?” My rheumatologist said “ just tell her it’s the same as we called it last year!” My Consultant didn’t want me to raise my dose anymore than 21mg as I seem to tolerate taking Pred very well but have great problems tapering and have had more problems reducing than folk on higher doses. I have had many flares,even reducing very slowly at 1 mg per month and using the DSNS method, often experiencing pain affecting my ears, back of the skull and glands.My Consultant eventually put me on Lefludomide as a steroid sparer. This was termed by my GP, as “ that fancy drug!” I am now happy to say that she is no longer my GP. Also I now no longer take lefludomide.
I started feeling fuey the day after touching down at Heathrow from a lovely holiday in Italy. That was September 2012. As time went on I was having more difficulty eating and felt nauseus. I also had blurring of the newspaper at times when I was trying to read. In amongst this I noticed my scalp was tender and my temperal arteries were becoming more pronounced. I also had some jaw claudication. I carried on with my life thinking it would all get better - but it didn't. One morning in the middle of November my elder son came and insisted he take me to A, and E. I was left there and they wanted to keep me in. My CRP was 452. At first they thought it might be gall stones and I was tested for that. I felt terrible and kept loosing vision for short periods. After nine days there they came late on the Saturday night and gave me 60mg of predisolone. Within a short period of time I felt a different person and could even put my head down on the pillow. In amongst all this I caught the norovirus bug that was going round the ward. The following week I had a biopsy which confirmed GCA. Altogether I was there a fortnight. I was so weak. I was sent home and got upstairs on all fours. I don't think those medics had any idea how I felt. Then at home I had a TIA. In the January I became conscious that the predisolone was having an effect on my eyes.
Had been on Prednisone for one year for PMR....doing well....then developed excruciating right sided head pain from occipital area up into ear, side of head, eye and forehead.....jaws very achy if chewed or talked too long....was immediately diagnosed by rheumy and put on high dose Prednisone....had a severe flare one year later with several episodes of amaurosis fugax....suffered some damage to left optic nerve along the way....
Jaw pain that got more intense as I ate. Scalp soreness. Headaches were different then previous headaches and I got them in my sleep. Ear pain . Head feeling like it was blowing up. Double vision at end of day esp. when trying to watch TV. The page turned yellow as I tried to read. Prior to all these symptoms I lost a lot of weight w/o dieting. I had undiagnosed PMR for a number of years before it progressed to the GCA symptoms. High sed rates and high c reactive protein.
PMR diagnosed in 2011 at age 52 by Rheumie in 10 minutes after several months of farting around by GP. Put on Pred, slow tapered...fast forward 6 years...was down to 3-4mg Pred, hadn’t been able to get lower. Losing weight, deathly fatigue, hoarse voice especially when tired, sensitive teeth. Never had headaches or scalp or vision issues. ESR 120 and CRP 160. Rheumie said “you know what this is”...yes I did. 40mg Pred and within 3 days much better! Unable to taper below 20mg after 1 1/2 years so decided to try Actemra. Been on weekly self injections for a year. Off Pred for 2 months and feel great. Fingers crossed!
I had been under a lot of stress, my sister died of a brain tumour and I was recovering from an awful viral infection last July, which left me with what I thought was sinusitis. Had antibiotics which didn’t help then a second course plus a short course of Pred. This did help, but symptoms recurred as soon as I finished the course. My headaches were awful, nothing would relieve them, but they were over my right eye, not my temple. I had what I know now to be jaw claudication but thought it was my throat. A lot of my blood results were abnormal and I had various investigations - I in the meantime was still convinced it was sinuses!! To cut a long story short, I was referred to a Haematologist who suspected PMR or GCA or both. I had a temporal artery biopsy which confirmed GCA and was referred to a Rheumatologist immediately. I think all the delays (my fault, not the Drs) caused lots of other problems and I am now left with a compromised circulation of my left arm and awful mottling of my skin (Livido Reticularis) which I hope will resolve eventually. I started on 50mgs of Pred, and having a very slow taper am now on 25mgs plus Methotrexate 20mgs weekly. I have no pain now, beginnings of cataracts, and I get tired very quickly on effort, usually related to using my left arm.
For about 4 weeks before I saw GP I felt as though I had flu coming on. Tired, night sweats, back of neck painful, earache, itchy ears (especially on waking in morning), toothache, sore jaws, strange feeling on right side of scalp that felt like I had combed my hair in a different direction. All in all felt really unwell. Young GP suspected GCA immediately.
2017, March - over a period of a few weeks had a very noticeable increase in general pain, difficulty walking, debilitating weakness - getting on and off chairs, toilet, up and down stairs. I was constantly fatigued, lost my appetite and lost weight.
April - Dr said it was a bad bout of fibromyalgia. Agonising pain in shoulders, hips and head, especially in bed. Couldn't turn over without help and often needed a stick to walk. May - We were on a cruise and, one evening, noticed black line across the bottom of one eye. During the night, the black area increased to completely cover the bottom half of my eye. Next morning, the black area had increased further. Immediate appointment with ophthalmologist in Cologne, Germany, who diagnosed AION and put me on 60mg of Prednisone and recommended urgent follow up tests. Flew back to Australia, more testing. Opthalmologist diagnosed GCA and continued Pred.
Over two years, reduced to 2.5mg Pred without too many problems, as long as I slowed down and cut back on everything. I had constant, extreme fatigue.
2019, February - inflammation markers, CPR, went from less than 5 (for many, many months) to 67, so back to 50mg Pred, then tapering to 25. Another flare and back up again. Now Rhuemy is looking at adding another med. to try to cut the Pred. down.
- Confirmed diagnosis of GCA 8 December 2015 at age of 67
- First took real notice of developing symptoms in late October
- Visited GP in mid-November with following symptoms: pain and stiffness in neck (including occasional painful spasms shooting up back of neck to just above left eye); dull headache; unusual dry cough; hoarse voice; feeling generally unwell. I thought it could be PMR because of family history: mother had PMR in her 70s and younger sister diagnosed with GCA and PMR at 60.
- GP referred me for physiotherapy for non-specific neck pain. Was given follow-up GP appointment for 2 weeks' time.
- 1 week later requested urgent appointment when developed severe headache quite unlike anything experienced before. Pain was across front of head and also in occipitol region. Other symptoms were sensitive scalp and occasional jaw pain when chewing. By now I strongly suspected GCA. GP took blood tests and said would call me following morning with results.
- Results were ESR 63 and CRP 106. GP said I had suspected GCA and she instructed me to start taking 60mg prednisolone daily for 2 weeks. Omeprazole, alendronic acid and aspirin were also prescribed. (Adcal-D3 was added later.) Prednisolone gave almost immediate relief of debilitating headache -- I remember thinking like magic.
- 2 weeks later had hospital appointment with rheumatologist. Inflammatory markers were dramatically lowered: ESR 2 and CRP 2.3. Rheumatologist told me I had classic GCA. Didn't get temporal artery biopsy, or ultrasound scan of temporal arteries because scanner operator was not available. Rheumatologist outlined plan for tapering prednisolone, and spoke about possibility of flares and use of steroid sparing drugs in some cases. Felt reassured after appointment and relieved to have had prompt diagnosis.
I believe my symptoms started in May of 2016. I had cold sweats during the night, my joints on my left side were very painful, and a few on the right side but not as bad. I lost close to 3 stone, about 40 pounds, and I was in constant pain. I went to my GP who did many tests which showed I was very anemic and my C-RP was sky high. My GP sent me to a specialist (hematologist) who said he was "baffled". In early August of 2016 I was still sweating profusely at night, painful joints, and losing weight when one Friday morning I woke up and could not see out of my left eye, it was total black. I called my eye surgeon, who had done my cataract surgery and he saw me that afternoon. He checked me and immediately knew what it was, GCA (Temporal Arteritis). He sent me to a Vascular Surgeon who did an ultrasound scan of my temples. Before I left his office he called my GP and they put me on 60mg of Prednisone telling me to take it immediately. My sight in my left eye returned and it helped the pain within hours. I was scheduled for a biopsy about three days later. I hope this helps.
I thank God for the quick acting Eye Surgeon and the knowledgeable Vascular Surgeon.
Re – My post - GCA FALSE ALARM. HOW QUICKLY CAN I REDUCE PRED.
Five weeks ago, I had a GCA scare – bad headaches, jaw pain and visual disturbance. I went to the eye clinic at the hospital and was given 60mg Pred immediately and two days later had a TA biopsy.
The registrar I saw at the follow up appointment a week later concluded that as the biopsy was negative, and as the jaw pain hadn’t resolved I did not have GCA and should start reducing the pred. I was very relieved, but at the time of this appointment I was taking 60mg pred so maybe I wasn’t thinking very clearly. I didn’t really know if the jaw pain had stopped or not as the TA biopsy site was still painful and the side of my face quite bruised. (I don’t want to worry anyone – the thought of it made me a bit squeamish but the procedure was painless and quite quick) I wasn’t doing much vigorous chewing!
I was told to reduce by 10mg per week to 30mg by which time I would have an appointment to see someone else.
I thought I could do better than that and reduced in quite large amounts until I got to 10mg, when all the symptoms came back but worse! Added to the headaches, pain on chewing and visual disturbance are pains in my face and a cough which may or may not be related. So, I put the pred up to 30mg, the headaches went, the jaw pain and face pain eased considerably, I have had no visual disturbances and the cough stopped.
The appointment last Monday was with a Mr Heath at the eye clinic in York. He said he had had a lot of experience with GCA patients in Leeds. He was quite pleased that I had reduced the pred so dramatically and that a return to 30mg had eased the symptoms as he was convinced that I had GCA and didn’t go with the negative biopsy. This was an added confirmation!
In his opinion the biopsies in GCA are rarely false. It is down to interpretation and would be seen as positive if looked at by someone else. As there is also something showing in my result he is going to very tactfully ask for it to be re-examined. (I didn’t know they kept all these bits of us!!)
He told me to stay on 30mg pred and we would see about reducing 5mg per month if everything was OK next visit. As my next appointment isn’t for 6 weeks, I am not sure how that is going to work!
My symptoms were not as bad as many people with GCA report, but I wonder if having PMR first means that as I have be on pred for over a year so the GCA is calmed down a bit.
19/04/19 Oct 2018 at age 63, I was diagnosed with GCA after waking up one morning blind in one eye. I had noticed jaw discomfort in June at the same time my son had his jaw broken. August added tongue cramping. Dentist didn’t know what it was after trying jaw guard. Other symptoms? Mid-Sept, two enlarged veins on edges of forehead with no discomfort. One week before blindness, I had about 10 seconds of seeing orange. I had never heard of GCA. In the hospital emergency room when blinded, the ER doc didn’t know what it was either. Worked all day trying to find someone in Michigan USA that would see me. Finally, sent to another hospital. Met opthamalogist that put me on 300mg IV every hour for 3 days. I regained some light in blind eye and a pencil eraser sized circle that I can see out of. Sent home with 60mg daily dose. Tapered to 22.5mg by March. Fell and got concussion. No worries for a month. Then, flashing lights in good eye (a first!), jaw pain, scalp tenderness, temple pain, sweats. Upped prednisone to 40 for 4 days. Day 5 on 50. Rheumatologist had directed an increase of 2.5mg, but that didn’t do a thing. (Note that the flashing lights only happened once for 15 seconds or so). Opthamalogist checked eyes and they’re looking good, so hopefully no worries there. My SED & CRP are always normal. Thankful that biopsy confirmed GCA. Saves a lot of arguing with new docs...lol.
Over the last 2 years I started suffering the following symptoms
Morning unilateral headaches, put down as sinus problems.
Toothaches but no explainations put down to grinding teeth got a mouth guard
Sweats put down as menopause
Swelling of joints, rhumatism symptoms got tested and came back negative.
Back in september I had flu nearly Every week for a couple of days, with all symptoms above aggravated. I believed I got a virus and was not fighting it off.
November, ended in bed for 10 days with heavy fever and then unsufferable migraine mainly in left eye. Im not a great fan of GP but my husband insisted to take me to the surgery. I was only going to ask for something to relieve the migraine and that is when the young doctor said she suspected GCA, put me on 40mg/day, did a blood test and few hours later she confirmed the diagnosis, by the time she called the migraine had nearly gone, I was only left with a sufferable headache.
Looking back and having read many GCA fellow histories, I believe I have had the disease for a long time but it never got out of hand and the symptoms all had a perfectly acceptable explaination. The crisis was flard up following an intense month of stress and worries.
I am now on 19mg but finding it very hard to taper down. I will start the Dorset Lady programme. My main side effect are in the eyes. I wake-up with light pain on the side but it gets better once up.
I find it difficult to read which is thehardest as I lovereading, watch Ipad, or tv although I was never a big screen fan.
I always over do everything to be reminded that I can no longer do as much.
Ihope this is informative. Again I would like to thank everyone on this blog as I would have felt even more isolated without it.
AT 83 years and having lived a very healthy active life - yoga, badminton walking, and gardening and art classes - I was diagnosed with PMR 0n 31 March 2017. I had spent two weeks of indescribable pain, mostly in my arms and shoulders, before it was confirmed after blood tests showed high inflammation. I was advised to start on 20mgs of prednisolone and 24 hours later I was able to walk upstairs unaided, which was impossible before. I tapered slowly without too much difficulty until July 2018 and was then down to 4mgs. However having done research online I was aware of the symptoms of GCA and when I felt a minor headache around the temple I went to my surgery but was told that as it wasn’t very painful it couldn’t be GCA. She had seen patients with GCA and they couldn’t even brush hair. Probably all I needed was a good neck massage. I returned again a few days later and was told again by a different GP that the pain was not bad enough to be GCA.
I had already arranged a trip to California to visit my son so went ahead. One morning after three weeks there I noticed very slight claudication of the jaw - had never experienced the feeling before but assumed that was what it was - but after two cups of tea and about 20 minutes it disappeared and we spent the rest of the day on the beach, with life carrying on as normal. I had the same feeling the next morning but with a very minor tenderness in the scalp. I noticed also that the arteries around my temple were enlarged.
I knew in my bones what it was and as I was about to return to UK increased the pred. to 10 mgs before flying home. I returned to surgery the next day but was told by a third GP that as I had not experienced very bad pain it could not be GCA; it was probably just a migraine. I was convinced they were wrong so went back again two days later as I still had tenderness in the scalp but no pain. Again my appointment was with a different GP. This one, hearing my symptoms, immediately rang the Rheumatology dept, who requested me to be there ASAP. Within one and a half hours I was in the day clinic being told it was likely that I did have it and was advised to start on 45 gms pred immediately.
The following three weeks I was desperately ill, with paramedics being called out twice. On 13th August, eleven days after my original visit to Rheumatology Dept - and, to my horror, I had to be taken in a wheel chair by my husband and daughter – I was given an appointment for an ultra sound, and GCA was confirmed by my Rheumatologist. He gave me a two-year graph to follow, taperering the medication slowly, and I am now down to 9mgs. I have had regular appts with him ‘
Fortunately I have not experienced the pain that so many members have had to endure, but I constantly feel giddy and unbalanced with tingling in my lips and tongue which nobody can account for. I am wondering if any other members have experienced these problems. After starting on 45 gms of pred. my blood pressure soared and I have been on indapimide and bisoprolol . I have not known whether these feelings are side effects of the pred, the bp tablets or the GCA itseslf. As it happens my own doctor has been away for the past year but returned two weeks ago and has now taken over my problem. She suggested I should stop the indapimide to see if this will help. But today I am still feeling the same and very fatigued. In spite of all I am leading almost my normal life although I have not yet returned to badminton, but have that in mind in the next month or two if I can sort out these little irritants. I’m also planning a return to California although maybe not until Christmas.
I look forward to reading your emals each day and will be so interested to hear if anybody else has had similar experiences.
Female, 64, USA, PMR/GCA, 20 mg Pred. Diagnosed May, 2017
Looking back, I believe that my journey with PMR/GCA started with a backache. I occasionally would pull my back by trying to carry too many groceries. I believed this was the case, but this felt 'different'. As I was still having symptoms, I decided to see a chiropractor. (I'm still not sure if the PMR was kicking in or if it was because of groceries.) I'd been seeing him once a week for 3 weeks, when on a Friday I presented to him with a terrible headache. He took my blood pressure, it was elevated, and he suggested that I should see my GP to have it checked. That weekend I laid on my couch in extreme pain wondering if I should go to the ER but talked myself out of it -- after all 'it was just a headache; people don't go to the ER for a headache (wrong!) and surely I could wait until Monday to see my GP.' I called and was able to secure an appointment on Monday. I first saw her Intern and then the GP joined us. I individually showed them both an artery on the side of my head that was starting to protrude and felt like it had pearls in it. Both felt it and commented with "hmmm". As my blood pressure was elevated, GP assumed the headache was related to that and added an additional blood pressure prescription to the one I was already taking. She also ordered blood work. No mention/reason was given to the artery.
Two weeks later, on a Tuesday, I was sitting with my best friend, whom happens to be a psychiatrist, and she asked me how my back was. (I must have looked like a beat dog. I felt like a beat dog! I was popping every type of over the counter pain meds I could get my hands on hoping for some relief from that massive headache.) I told her that my back was fine, but that I CANNOT GET RID OF THIS HEADACHE!!! AND NOW WHAT IS THIS??? and I pulled my hair back to show her the artery. Her eyes bugged out like a cartoon character. Her demeanor became very serious, she pulled out her prescription pad, wrote something on to it, passed it to me and said "I want you to go call your GP right now and tell her that Dr. (her name) requests that you get in immediately - TODAY - for possible Temporal Arteritis. I did. I got in that afternoon. I remember how bizarre it was that as my GP was interviewing me, she had her computer split screen and I could see that she was reading about TA/GCA as she asked me questions. She told me she did not feel comfortable diagnosing me, but she gave me a Rx of Prednisone to pick up and it was stressed that I get it and take it as soon as I left her office. She also arranged for me to see a Rheumatologist the very next day. And she apologized for not catching it. Although she had been in practice for over 10 years, she had never seen a patient with GCA/TA before. (Unfortunately, she also missed the results of the labs as both markers elevated. ESR 51mm/hr and CRP 49.9 mg/L.)
Next day (Wednesday): During my exam with the Rheumatologist, I was asked if I had any relief from the headache and I was thrilled to tell him that although it wasn't gone, it was now much less painful. Amazing how in less than 24 hours, I was feeling so much relief!!! Although he was confident in the GCA diagnosis - I had other GCA symptoms, i.e. jaw hurt while chewing, temples tender, etc. Edit: add unexpected weight loss - , he wanted to me have a biopsy and was able to schedule a consultation appointment for me with a surgeon for that Friday.
Next day (Thursday afternoon): I receive a call from the surgeon's office that not only had my appointment been rescheduled, but my surgery had been scheduled for the VERY NEXT DAY. (I was later told that my rheumatologist went to the surgeon's office and requested that I get in ASAP. They are buddies.)
Next day (Friday): Met with the surgeon for the consultation, prepped, and wheeled into surgery. Biopsy done and confirms the diagnosis of GCA. Although I was not happy to receive it, I was extremely grateful for the diagnosis. It left no guess work on what the treatment would be. (Fun fact: I later learned that this surgeon has quite the reputation in his department for his ability to know exactly where to take for a biopsy. He's young and hasn't been out of residency long. I think he said I was around his 8th patient that he'd been able to secure a positive result. I told him that he's the GCA biopsy whisperer.)
So, although my GP missed it first go, she really stepped up when it was brought to her attention by getting me a next day appointment with a Rheumatologist and starting me on 40 mg of Pred that day. I cannot say enough about the steps my Rheumatologist and Surgeon took to insure an accurate diagnosis.
Therefore, my journey to diagnosis was relatively short. Presented with the headache; two week later in GP's office getting a Rx for Prednisone and an appointment with a Rheumatologist. From that Tuesday to surgery on Friday. It still blows my mind and makes me humble at the care I received. I remember thinking when reading Kate's book, how impressed she would be at them treating me as a 'medical emergency'.
A couple of weeks later, I checked in with an ophthalmologist. All ok.
Interesting side note: I saw 5 specialties for this: my best friend the Psychiatrist whom first recognized what it probably was, an Internal Medicine doctor (GP), the Rheumatologist, the Surgeon, and the Ophthalmologist. I work for a medical school as a clerkship coordinator. All 5 of these physicians I had interacted with when they were a third year medical student as they rotated through our clerkship. My mantra in my job has always been two-fold: 1. Be kind to the medical students as their tuition pays my salary, and 2. Be kind to the medical students as you never know when they might be called upon to treat you. Boy, did #2 come true! They just may have saved my sight!
(Sorry for the lengthy reply. I need to learn how to edit.)
So sorry, only just seen your GCA stories post - thank you, so very interesting, and many quite different. (I shan't add mine now, these are two years old and the project is completed), but one thing I did notice is that while I didn't have the burning, or pain , tender scalp or jaw problem (I still have to look that up), however my original inflammation levels were significantly higher than any I've seen mentioned, ie protein level was 360 (even higher when I'd left hospital) and ESR was very high too. So I wonder if there's a correlation there - what you lose on the swings, etc...
Oh no - please DO add your story. Something many people like to know is real examples of getting a diagnosis and living with GCA. At any one time on the forum there aren't that many people with GCA, it is a rare disease. so they need to be collected when they are there. It is an old thread but needed for the FAQs, without these sort of threads, compiling the FAQs would have been much harder.
A headache developed which felt like a tight band around the back of my head, coming around to my ears. GP said it was a tension headache. I rarely get headaches, and never one like this. It wasn't constant, and was made worse by lying with the back of my head on the pillow (impossible to avoid with my PMR symptoms as lying on my back was the only reasonably comfortable position I could have) or resting my head against the back of the sofa. I then developed painful ears. The outer cartilage bits felt like I had been lying on them folded over. The insides of my ears were sore and itchy. The headache transformed into a pain either side of the dent at the back of my head - I've since found out this is the occipital area. It was a bit like neuralgia, shooting up from my neck. At no time did I have any headache in the temporal area, nor was my head sensitive to touch except for pressure. I then developed swollen glands in my neck, and felt generally unwell, like when I had glandular fever aged 21, my head felt like it weighed a ton, I was very tired and had the chills. 15mg of pred was prescribed which was enough to almost but not completely rid me of all these symptoms except a slight headache still at the back. This was increased to 40mg after an emergency referral, and it went completely.
Hi everyone. Last June I became a member of the GCA club, though not by choice. I wanted to share my story in case others experience somethig similar. It began like a common virus; sore throat, runny nose, mild fever of 100.5. I thought it might be covid, so got tested and was negative. I had been fully vaccinated and at that time, prior to the variants, we thought we were very well protected. I talked to my doctor, and was told to come in to the office if the fever did not subside in a week or so. It did not get better, so I went in. Blood tests were done, but it was not evident where this "fever of unknown origin" was coming from. It did not improve, so I was told to go to the ER, where they had access to additional tests. Again, no clear reason for my fever, chest congestion, and worsening cough. I also was unusually fatigued, falling alseep much earlier than normal. I did have scalp sensitivity, but no jaw pain or vision issues. My symptoms were like a really bad cold with a persistent fever.
My primary doc could not figure it out, so he referred me to rheumatology and infectious disease. After a few days, and much to my surprise ,I got a phone call from the rheumatology clinic saying that a doctor wanted to talk to me right away. I was glad to hear that, as I was feeling pretty lousy. We did a virtual visit, I described my symptoms, and he said it was likely something called Giant Cell Arteritis. He immediately started me on 60mg of prednisone, and I schedued a biopsy a week or so later. The biopsy was not definite for GCA, nor did it rule it out. My blood work indicated a very high sed. rate . I responded quickly to the prednisone, feeling better quickly. All this led to the conclusion that I did have GCA, although not with the typical symptoms.
I started tapering off prednisone, a six month taper, along with beginning weekly Actemra injections. Fortunately, I qualified for getting Actemra for free, as it is ridiculously expensive. I got off prednisone in January and was doing great on Actemra only. Then with covid spiking, supply issues arose with Actemra, and I could not get it on time. My doc didn't want to put me back on steroids unnecessarly, so we agreed to see how it goes off the meds. Unfortunately, 6 weeks later or so I got a sore throat and began symptoms of a cold again. But this time, no temp., so I really did think it was just a bad cold. But, it did not go away after a week or so. As it turns out it was indeed a flareup, causing symptoms similar to the first time, which included the worst cough I have ever experienced. I got back on steroids, 40mg this time, and back on Actemra as the supply has improved. I am tapering by 5mg each week. I'm doing much better again, but humbly realize this disease is part of me and I'll need to keep treating it for quite some time.
Well, that's more than you probably wanted to know, but I thought I'd send my story out there. I'm especially curious if anyone else has had these cold/sinus/cough symptoms that I've experienced. Be well!
Mine started Oct 18, 2021. It started suddenly with a left temporal headache which i had never experienced before. I also noticed left jaw tightness/pain associated with movement of my mouth. Took ibuprofen with little relief. This was on a Friday and continued all weekend. Over the weekend the left temporal artery started swelling and became tender to touch. I went to my primary provider Monday a.m. and they sent me directly to the ER where they performed a CT arteriogram of my brain and lab tests. My ESR and CRP were not elevated but the CTA was consistent with GCA. I was admitted to the hospital and started on Prednisone 85mg. A left temporal artery biopsy was performed and showed GCA.
I’ve been on a prednisone taper since, methotrexate and now abatacept.
Does the abatacept help? It works via the t-cell activity which is usually considered a minor contributor to GCA so I am very interested to know why it was chosen.
I was screened out on taking actemra due to a history of diverticulitis . I was having lots of difficulty coming off of steroids- symptoms kept returning- headache, severe fatigue, weakness, scalp tenderness. I also developed GCA in my right temporal artery while on high dose steroids. They max’ed me out on methotrexate- 24Mg weekly. When that didn’t help decrease steroid dosage they decided on abatacept. From what I understand there are studies in progress with it that are promising. I haven’t looked them up myself. If this fails there is a study with NIH on another medication, but I think the abatacept is helping. I am now down to prednisone 25 mg and although I am still having some GCA symptoms they are tolerable and my strength is returning. Some days are bad but most are better.
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Return of GCA-like symptoms....from 2 months ago
GCA symptoms
GCA symptoms 
Looks like I need to watch what I say
