Hi. I'm new to this, and keen to find out more about GCA/PMR.
It started with a headache to end all headaches, lasting a week, and totally unresponsive to paracetamol. Prior to that I'd had about a year of painful arms, fingers, hands, shoulders and neck which had been put down to general wear and tear. But oh, that headache! And a painful scalp, and jaw clicking with what I'll call tongue fatigue, and blurred vision complete with a pink cloud! The GP put me on 60mg prednisolone, which zapped the headache and all the joint pain within a couple of days. A blood test (done after 3 days on the steroids) was normal, and a temporal artery biopsy (done after 3 weeks on steroids) was negative. But the biopsy was taken from a different part of my head to where the pain was! Even the GP said that was odd, and agreed that the negative tests could well be down to the wrong choice of biopsy site, the extended delays before the tests an biopsy, all compounded by having been on a big dose of steroids.
Right now I'm down to 35mg per day steroids, and two months since it all kicked off I'm still waiting for a referral appointment. (Our local NHS is in a terrible state post-Covid, and it's nigh on impossible even to see a GP - although they will eventually reply to an email.) Lingering symptoms include jaw clicking and discomfort, a vague numbness around one eye, with daily but relatively dull minor headaches over the same eye. Vision is now normal, pink cloud and blurriness all gone away. At times I feel very weak and shaky, struggling to function, at other times I feel OK. I do wonder if the steroids could be responsible for this general malaise, which is made worse by exertion.
I have very little faith in the diagnostic experience so far, the biggest problem being the total lack of communication and information. I'm also uncomfortable with being on a biggish dose of steroids still, so I'm tapering this down myself by 5mg every few days.
I do wonder if the Pfizer vaccine is involved in some way. The general joint and muscle pain started last year just after my second jab, and so I'm reluctant to have the booster.
I'd be very interested to know if any of this chimes with anyone else's experience of GCA/PMR.
Thank you!
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TJRN1959
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I’m sorry to say that your experiences do chime somewhat with mine. The main difference being that I was initially diagnosed with PMR and, after a long wait to get a GP consultation, was put on 15mg prednisolone. This gradually improved the pain in my shoulders, arms and hips, but I never had the quick response that some people have.
Soon after my PMR diagnosis, I developed the head and jaw pain and discomfort that you describe, went to A&E and was deemed ‘probably’ not to have GCA. A rheumatology appointment followed, same result (negative ultrasound). Eight weeks or so went by, I got down to 9mg, headaches and blurred vision came back. Another negative ultrasound, but was diagnosed with GCA on the basis of my symptoms and put on 40mg. That was nearly nine months ago, and since then the only follow up has been a telephone rheumatologist appointment, and GP blood tests as and when I’ve requested them.
To be honest the best care I’ve had has been from my optician, with whom I have regular check ups. I pay £14 a month into a scheme they have and am seen every three months or so for eye health screening.
Two things particularly strike me from your post. Your general malaise could be due to pred, but it could also be due to GCA itself. Also, you are reducing the pred at your own pace, which I understand given the lack of support you’ve had. However, especially as you still have some symptoms, I’m concerned that you should have more medical advice about this.
Your GP seems to have been quite proactive in the beginning. Could you make an urgent appointment with them? Request that the rheumatologist appointment be brought forward? And if all else fails, is there any way you could see a rheumatologist privately? I really feel you need more medical input.
Wishing you well and hope you are able to get better support xx
Welcome, and so glad you are here. I'm an 81 yo gal in the states who had an experience VERY similar to yours, except I didn't get diagnosed until I'd lost sight in one eye. I knew nothing of GCA, never heard of it. I'm no doctor, for sure, but I have been working on reducing my Prednisone by 2.5 per month . I'm at 12.5 and will only decrease by 1 mg per month once I hit 10, so I'd hesitate to reduce and possibly focus on getting yourself to a comfortable feeling level until you get the proper medical advice and guidance.
I've been on the prednisone roller coaster since August of 2019. Please don't rush the journey, it is not worth your sight. Every time I reduce my prednisone, I feel tired, out of sync, and just generally off. After 4-5 days, I feel OK. Just by the time you adjust to a new dose, you are reducing again~please slow down.
The only thing that you mentioned that I did not experience was 'clicking' of the jaw, my jaw just hurt so much when I chewed, I had to stop.
I know a woman who had a negative biopsy and has GCA. After several years she still takes 1 mg of pred per day. Many of the gals here will tell you that you can still have GCA with normal blood tests.
This forum has saved me over and over and over. I'm so glad you are here. All my friends are in bed across the pond, except you~!! There are some really knowledgeable 'old hands' on here who will be responding in the morning I'm sure. Welcome, welcome💕💕
I suspect that my mother may have GCA and am curious about the diagnosis. I was diagnosed with PMR years back. I know PMR/GSA can. run in families and she has many of the symptoms of GCA, including most recently--claudication in her lower extremities (found this online in my reseearch. pubmed.ncbi.nlm.nih.gov/114... ). It appears diagnosis is done by a biopsy but when we follow up with doctor is there anything specifically needed to be requested. when getting a biopsy done?
The primary diagnosis is on the clinical picture, the signs and symptoms. But if you think you mother has GCA it is a medical emergency and you need to get medical advice sooner rather than later.
Lower limb claudication is less a symptom of GCA specifically than a sign of extensive peripheral arterial disease - and the swelling due to arterial inflammation can cause it. The biopsy is pretty unreliable - a positive is 100% certainty it is GCA but a negative one doesn't mean it isn't, it means they didn't find what they were looking for in the small bit of artery they can look at: the giant cells that give the disease its name.
If she has claudication she needs referring to the vascular specialists anyway - something is going on in her arteries somewhere. The sooner that is identified, the less long term damage will occur.
All of that chimes with my experience. A week after my OAZ I was really in trouble. Artery pain above eye, pain down ear to jaw, bulging eye, cloudy vision terrible headache with skin pain all over head and I passed out three times, once out of doors. So ambulance for that -A&E 3 times. 60mgs Pred, dropped quickly to 10 but with advice here I resolutely stuck to 30mgs till jaw Claudication stopped. No help from Gp or specialist. I’ve had virtually no medical aid apart from 111. Bells Palsy then Shingles. I saw optician twice snd had face scan which saw no GCA. Blood tests not disclosed but said to be normal.
Good morning your experience is very similar to mine with dreadful headaches etc in 2019/2020 l was eventually diagnosed with GCA following a blood test in May 2020 during the first lock down.
My inflammatory markers were through the roof. Prednisone 60 mg totally stopped it. I have had pred side effects the whole time.
I always feel rough when reducing steroids and haven't been able to get below 8.5 mg before the GCA. flares up again. After being put back up to 20 mg l am now down to 14 and due to go lower this week.
I was warned to not rush the reduction off pred as it can cause an adrenal issue. You may feel better just going down by 1mg each month l definitely would be careful with the reduction rate you are trying as it is possibly not giving your body time to readjust.
In my experience the pred is definitely responsible for feeling very tired, weak and weird.
The difficulty in getting answers and advice is a total nightmare and has made me very low.
I have had a fourth covid vaccination and did wonder if the bone and joint pain were connected.
I’m going to give you some links which might help you, first is general info , and rest stores from other GCA patients - all of which can be found in the FAQs - which is a good source of all thing GCA & PMR related.
Your ongoing issues are very familiar, and although you are on meds, the underlying illness is still very much there so you do need to pace your activities- there is a link in first post to that.
As for the covid jab, it probably was the final straw to an already stressed immune system, and yes you do need the booster.
You do need proper medical advice, and you may not like being on higher doses of steroids, but if it is GCA, and sounds very like it to me, despite no evidence found at biopsies ( but that’s another story) - you need to be on the correct dose to protect your sight. As suggested any possibility of a private Rheumy appointment.
You sound to have had PMR for the year before it progressed to GCA - so maybe the vaccine was the final straw that triggered the autoimmune disorder that underlies them both. But it alone almost certainly wasn't the only cause, it is an accumulation of years of insults to the immune system and eventually a straw breaks the camel's back and the immune system goes haywire.
The NHS is a mess - but GCA is classed as a medical emergency - like a heart attack or stroke, and they are referred and seen immediately. GCA that has progressed to visual loss is effectively a stroke localised to the optic nerve and there is an increased risk of stroke in the first year after diagnosis. You need specialist care. Up to a fifth of patients don't have raised blood markers ever and they can fall very quickly once you are high dose pred. The biopsy may be termed a gold standard - but it is rather tarnished, it is positive in fewer than half of patients. There are all sorts of reasons for that including as you touch on - the GCA isn;t actually affecting that bit of artery! Then the decision is made on the basis of the clinical pictures - and yours was textbook. You are very lucky to have a sensible GP - because he almost certainly saved your sight. Once visual symptoms start there is a window of less than a week (if you are lucky) to get things sorted. And once vision is gone in one eye, it is 50/50 as to whether it will go in the other and VERY high doses of pred are required in the hope of preventing irreversible visual loss.
Please DON'T taper that fast - GCA is a chronic condition and too fast a taper means that you are likely to overshoot the dose you need and you are back where you started. There are people here who will tell you their stories of the problems they encountered after allowing a flare of inflammation. You can taper 5mg at a time - but not every few days, every few WEEKS is more like it.
Putting in my tuppence worth: I did lose the sight to one eye because of slow diagnosis. FYI, my rheumy advised that if you started on Prednisone, then it is likely that the Biopsy will not be true (because the Pred has knocked it down); but am sure that PMRpro and Dorset Lady can enighten. The symptoms you mention definitely line up with GCA.
I echo all the above comments. Please don't taper so fast. I have both and can reassure you that too rapid a reduction is worse than a steady reduction. It echoes my experience and I was extremely fortunate not to lose sight. The response and diagnosis in the NHS is patchy and in need of an overhaul. Rheumatologists need retraining and the consultation and backup is bad. Learn what you can here and welcome to the fold.
Thank you to everyone who has taken the trouble to reply. You really are very kind. I will take the advice and get back in touch with the GP today. Initially they were very good - the headache was so bad that first night that I went to the Out-of-Hours service. But it seems that since then, and once you're "in the system", that everything slows down to a crawl.
Interesting stats about the biopsy. At the time I was warned that it might produce a false negative, but when I asked for the numbers around that I was told that no studies had been done. The risk of a false negative was even written on the consent form, but when the result came back negative I was told that it was the "gold standard". I've always had faith in the NHS, but this has shaken that to the core, and I'm more than a little concerned that no-one is listening.
Thanks again, and I will act on the advice you've so kindly given.
Don't blame the NHS - the biopsy is used worldwide and I doubt many of the doctors actually understand what gold standard means! It isn't a true gold standard, there isn't a gold standard to compare it to - the only person who can get it right is the pathologist who sees untreated cases after death! And pred between diagnosis and biopsy makes a false negative more likely - but you can't wait, the patient may lose their sight in the meantime.
"a thing of superior quality which serves as a point of reference against which other things of its type may be compared."
When the TAB is positive it is 100% certain it is GCA. You can't better that. But the reasons it may be negative vary widely from poor technique sampling the artery to the disease not actually affecting that artery. They also do an ultrasound technique that according to studies is just as good compared with the TAB - but it too can miss it if the GCA isn't affecting the right artery.
Not sure they are correct about no studies having been done though. Must have a look.
But there is this discussion which is perhaps something all rheumies who think a TAB is perfect should be made to read and show they understand:
Part of the problem is that most doctors never work in a hospital path lab during their training so they think what comes out of them must be perfect. Unfortunately, not ...
I would like to add my vote for a) having the booster and b) not tapering too fast. The side effects of pred can be very horrible and it's very patience-trying to wait for the time till the next reduction to be up - but it's much more disappointing to have to increase again! I also had the shakes with high doses, but that has improved a lot as the dose has come down - more or less disappeared at about 20mg. I'm very impressed by your GP!
I echo what people have said - you need a rheumy appt asap to settle on a sensible tapering regime. Needs to be a careful taper cause you have had eye symptoms. You can get advice on a knowledgeable private rheumy from the forum.
In my experience the wobbly shaky feeling may well be pred - I am shaky on everything above 20mg and sometimes when tapering. One of the problems is separating pred symptoms from GCA - and they come and go.
Pred symptoms will get better as you go down the taper. It feels hard at the start but before you know it you will be on a lower dose and you will feel much better!
On the issue of the vaccine. This has to be a personal decision. Perhaps it depends how strongly associated the PMR/GCA is with the vacc. I started with GCA 5 days after first vaccine. Second vacc on 20mg, so just a few aches and pains. Third vacc on 7mg and had a flare which has taken four months to control (fingers still crossed) and put seven months on my journey. I have a strong link with the vacc and my rheumy has said to think carefully about having another. I'm not going to. Howerver, I have no underlying health conditions that would make me vulnerable to covid, we now have antiviral drugs for which people on high doses of steroids are eligible, and I don't have lots of young family.
" put seven months on my journey" - you cannot be sure of that at all. The reduction really isn't a straight line progress and maybe because of the delay now, you will sail through a later stage instead of stopping and starting there.
And again, thank you for all the additional comments. I've been in touch with the GP - well, sent them a message via the online portal they use, so hopefully I will hear back tomorrow. I won't do anything more about the tapering until I've spoken with the Dr. I must admit that the scary bit is the thought that you can lose your eyesight to this, it's something that is really worrying me more than anything else.
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