Hi, posting to see what others with GCA think. Diagnosed January 2024, started prednisolone on tapering regime. All going well until May 2024 and down to 15 mg pred daily, when severe intermittent pain behind ear radiating along forehead and around eye started. Difficulty in getting any medical assessment which I’ve previously related here so after seeking advice on here dropped back to 20 mg daily for two weeks then reducing agin by 1 mg instead of 2.5 mg every two weeks. Finally saw consultant in July who was categorical not a relapse because all inflammatory markers had been normal since starting treatment (they are checked monthly) but arranged MRI of head, conducted in August, no cause for pain found. Consultant said that invariably flares / relapse are accompanied by raised CRP and ESR,. Pointed out that literature and NICE guidance and BSR say that normal inflammatory markers does not rule out flares / relapses. He said he had only come across one patient in 39 years practising where that was the case.( Since I’ve come conclusion that the pain behind ear which is some kind of problem with neck and neuralgia because of the symptoms and the way I’ve learnt to control it and head it off. and am seeing physio soon). Continued to reduce by 1 mg fortnightly from July. At 10 mg changed to reducing by 1 mg every four weeks and on 18 Dec got to 9mg. O week later, day before Xmas Eve, developed a tender area on forehead just below hairline on right hand side when I ran finger over it, pretty sore. Still there Xmas Eve, Paracetamol made no difference. Dropped back to 10 mg. Still no difference. Reverted to 15 mg for a week. Pain went away and comfortable again. Dropped back to 10 mg. Just after Xmas contacted reheumatology. Same palaver as in in summer, no helpline operating, consultant saying I have to go to GP and they can seek advice from him by using the NHS intranet. GP s refusing to use it cos of industrial action to support claim for more funding. Explained all this to rheumatology admin who insisted I use answerphone for advice line which doesn’t exist! Next day, rheumatology nurse phones me out of the blue, ( apparently copied into email consultant sent refusing to provide advice directly). Sanity prevails, Explained that self treatment had resulted in symptoms resolving so advised to remain on 10 mg daily for full 4 weeks then resume tapering. Due to drop to 9mg this coming Monday. However, three days ago same tenderness on left side of forehead started about one inch below hairline. Only apparent when finger is moved across forehead, not on static touch. Can feel,artery pulsating under tender area. Now unsure whether it’s a flare. I never had tenderness of scalp or forehead as symptom when originally diagnosed, which is causing me to wonder if this is something separate or whether it’s just a new manifestation of GCA, . Tried to contact rheumatology nurse who contacted me before but no answer. Had inflammatory markers checked 13 January. Both normal. Really unsure now how to proceed. Persevere with taper? Try to get assessed, knowing that consultant will say inflamm markers normal therefore no concern? Try a drop back, though feel I’m going backwards? Anyone any views from their own experience about these symptoms, given .iI thought that a flare would be a recurrence of symptoms I had originally and these are different (having said that that might be wishful thinking)? Should add really I ought to be able to get support from GP s but without going into how they operate and their lack of involvement and interest (got roundly told off for asking them to be involved in July when I said was concerned treatment might need to be adjusted and having difficulty getting rheumatology to respond). Any thoughts. please.
New and different symptoms - flare?: Hi, posting... - PMRGCAuk
New and different symptoms - flare?
"Consultant said that invariably flares / relapse are accompanied by raised CRP and ESR"
"He said he had only come across one patient in 39 years practising where that was the case"
He can't have it all ways! Invariably means always - then he says he HAS seen it.
If the artery is pulsating that is usually taken as an indication GCA isn't affecting it.
I posted recently with something indicating that when GCA flares, it may be very different from the start.
healthunlocked.com/pmrgcauk...
As for your GPs - I would be initiating a complaint. Poor service is one thing and under the current situation not surprising. NO service is another and not what they are paid for.
Yes, I was aware that he was contradicting himself. What he was really saying is that in his experience it is exceedingly rare for a flare not to be accompanied by raised inflamm markers. I did say at the time I wasn’t entirely convinced . He wasn’t offended and is very approachable and personablle and isn’t in a rush to get you out of the room. At the time of my diagnosis he spent two hours with me taking a history, and did the US himself talking me through what he was finding and showing me on screen. The problem getting a review is that he is protecting himself from overload.. understandable but also not helpful when you are worried.
Complaining about the GPs won’t change anything, as they are in self preservation mode so between them and the consultant you just fall down a hole in the middle, and have to be very assertive . I complained, nicely, to one of the partners, about “ missed opportunities” to diagnose me originally, and to pick up their shared responsibilities after diagnosis, and she agreed and apologised, but it hasn’t changed their lack of interest. Changing practices might be an answer, though far from guaranteed, but given where I live and the lack of options I really don’thave any choice but to remain
Hi
PMRpro has covered most things but would just add -
The pain around ears could be GCA, the charity was involved in study a few years ago -
link.springer.com/epdf/10.1...
Tenderness on scalp is very typical of GCA - and even though you didn’t have it previously doesn’t mean it isn’t relevant now.
Enlarged temporal artery is also a commonly mentioned symptom.
My advice would be no more tapering for now [in fact more Pred required] and get yourself another Rheumy.
Any chance of seeing one privately - depending on where you live we may be able to suggest someone.
Hi. Thanks for responding. I am pretty sure the pain behind ear - it’s on my head behind my ear - is related to neck issues and not TA. I can control it with paracetamol, and have learnt I can sometimes stop it very quickly by shifting the way I hold my head or what activities I am doing. Sometimes I can hear my neck crunching, so my guess is possibly some arthritis and maybe some intermittent impingement on the nerves. I’m seeing a physio in a week who will get me in the system and can order investigations if she appropriate. There’s a condition called occipital neuralgia which I came across which my symptoms fit and which, interestingly, the information I read said can be confused with TA! It’s not related to deafness. I have tinnitus, but have had that for over 20 years related to some hearing loss I developed after a very severe ear infection in 2005. I’ve no visible temporal artery enlargement though i’m aware professionals can palpate what we can’t see. A part of my forehead below the hairline on the right hand side is mildly tender when I pass my hand over it. I’m going to try to speak to the rheumatology nurse who rang me after Xmas to see if she can get me reviewed. I;the meantime I shall stick with 10mg. Would rather not increase again, because the tenderness is quite mild, and I had a false alarm before,and at this point have no other concerns. However if things worsen I will, following your template. Yes I would entertain a private rheumatologist to see what they think, though what happens after if they don’t concur with my NHS one is a big question but would give me leverage with GP to refer. Not easy to get another NHS rheumatologist. He may be the only one in north Cumbria, though not asked the question. , so suggestions welcome. Can travel, and reasonable distance not an obstacle.
Then maybe put up new post re Rheumy suggestions .. likely to get more replies.
Our go-to man is Surrey based, so probably not an option…depends how desperate you are…
Thanks Will do.
He's only at the other end of the M6!!!
There is supposed to be a VERY good guy in Glasgow. Bawa. NHS it would be Newcastle or Gateshead but don't know who does private there. Mike Plant in Middlesborough is also to be recommended.
… and a bit!😳
sternokleidomastoid muscle tension can cause GCA-like symptoms. If mine is stiff I can get quite sharp pain in the temple, behind the ear and base of skull on that side amongst other places.
healthline.com/health/stern...
youtu.be/DCOuG3bs2f0?featur...
Thanks. Yes, I omitted to mention stiffness and pain in my neck - a pulling sensation when bending my neck to the side, which is always present when I get the pain behind my ear / base of skull area. Always on the right side . Pain starts in one specific area then radiates up and sideways, often affecting the orbit area., sometimes feeling it’s behind my eye. Stiffness and pain comes and goes, sometimes quite rapidly, other times more prolonged.
Very SCM-ish that.
I did describe all this to the consultant in July, and to GP in May (one of the two times I ever got to see GP at my practice). GP said could be migraine, could be glaucoma. Did nothing, Sent me away. I feel I’m on a never ending journey of self diagnosis.
sounds like consultant doesn't understand and like many thinks his view is the most important. You'll have to get used to research and self diagnosis as often the best approach. It sounds like a mild resurfacing of GCA to me regardless of bloods. I think your pred reduction may be too fast. Stay alert and don't be palmed off by medics. You know your body better than them.
My reductions since July have been 1 mg every fortnight up to 10 then by 1 mg four weekly and all was fine till I hit 9, then began to experience an issue on the right side of forehead. self treated by upping to 15, for a week, then down to 10, and for 3 weeks all ok, then this on left side of forehead. Hard to see that that has been too fast a reduction.. What is somewhat confusing is that I reached 10 in mid November and had no problems at all then, completed four weeks at 10, reduced to 9, then problems, which I sorted, but now they have reappeared on different side on 10. I’ll stay on 10 to see if it resolves so that slows it down anyway by extending the intervals of reductions.
Aftervwatching the video I can see the insertion point it discusses is just below the area where pain starts
Officially diagnosed GCA in early October, Pred 60mg, 50 morning 10 at night, in December was advised to start the taper, now 20 and 10, New and improved headaches now, left temple through behind both eyes, worse when lying down, panadol and the rest won't touch it. Teary eyes, and shaking through whole body while awake and feel like terrible. Rhumy said I should be better as all inflammation has gone down in my bloods. Saw the ophthalmologist after and he has looked at the blood vessels in my eyes and said angry and inflamed!! Now to tell the Rhumy next week about that. Cramps in calf's and feet and thumb and first finger, sometimes cannot get in the car, Rhumy has me booked for the Neurologist guy in late June! Now also walking funny again uphill with light pains in legs up to my backside, wife said before Pred I was walking like a duck! Now reducing I have a few concerns!
"Rhumy said I should be better as all inflammation has gone down in my bloods."
Another who wants to treat the lab results and not the patient in front of him.
For your cramps - try magnesium, pred depletes it. You can use oral supplements or topical versions - sprays, creams or adding Epsom salts to your bath or a footbath. Really helps a lot of people.
Out of interest - do you have any palpitations?
Hi PMRPro, am jumping in here (sorry!) re palpitations - are they more common in PMR or when on prednisolone? I have a hemi block with, until recently, occasional missed beats/ irregular heart rate but over the last few months they have become much more frequent and noticeable. I went to GP about this before Christmas who sent me to A&E with a possible MI - false alarm but they were unconcerned about the heart rhythm (in fact I don’t think I had any missed beats at all on the ECG) and just sent me off home. I was just curious about your question and wondering about connections.
Don't apologise about joining in a conversation - it is how this forum often works, There are people who object but they are a minority and the forum won't change from its inherent nature for them I'm afraid.
Atrial fibrillation is more common in people with RA and PMR - a study was done on it. I had asked a PMR expert if a/f was more common in PMR patients some years ago and she just said it was the same age group so difficult to say - the study confirmed my suspicions!
pmc.ncbi.nlm.nih.gov/articl....
Have you access to a smartwatch that records heart rate? An ECG isn't much help unless it is recording during an episode - very unlikely when it is just a few minutes! Even cardiologists accept the records as enough evidence to look further.
Thanks so much for your reply - I think this must be what I have, but I’m surprised the cardiologist didn’t want to check with a 24 hour ECG ( I have arrhythmias every day, especially at night). I suppose they wouldn’t have treated me anyway, so a bit pointless? He was very reassuring re not worrying about palpitations unless other symptoms are present, such as chest pain or breathlessness. I haven’t had a proper review of my PMR for nearly a year and no bloods since last January so maybe I should get that sorted. I am so grateful for this forum and particularly for your and everyone’s input, it’s a marvellous resource and support - I’d be lost without it!
Hmmm - not the way they deal with potential arrythmias here, They may not treat them if they don't bother you, my husband had other stuff but the a/f didn't bother him too much so it was just tolerated. BUT, atrial fibrillation is one of the primary causes of stroke as it can disturb clots in the base of the ventricles so they enter the circulation. So at the very least you are put on anticoagulant therapy to reduce the clot formation. My husband was already on that for a clotting disorder. I was put on it immediately they found the arrythmia. Then theu looked for why ...
Not got a handy grandchild to suss out the Fitbit?
Resting heart rate for the past month 105 +, Dr says it's OK! This has happened only since the tapering. Feeling drunk, and have unsteadiness can easily walk into door frames, arms bruised , extreme fatigue, can have a nap and feel much better upon waking and that only lasts up to one hour. Rhumy has me on magnesium, D3 and vitamin K2 since October. Also on Resprim Forte Mondays and Fridays morning and night. Skin on chest and shoulders reddish brown, advised it is a reaction to the meds?
What was it before? And is it regular? Though I think Resprim can increase heart rate and cause it to be irregular,
Only since the taper I have noticed it and now monitor it, can feel the blood pumping "noise" up in my head daily. Thought it may also contribute to being shaky, don't know? Meds taken now for "GCA, Pred, Resprin, Acturema fortnightly, pantoprazole", and lastly Pharmacor Olmesartan for blood pressure, 2 years now.
Forgot to add, the fast reduction in Pred is due to extreme swelling in my legs and feet, also fluid around lungs. Now on Lasix to reduce the water load, not really working that much. Never been this sick for so long, As symptoms started in late July, at least the pain have gone, but weakness terrible.
Sorry about your wretched experience with the NHS.
In my latest GCA flares during 2024 I have had sore spots on the hairline (plus stabs around the scalp, around the ears and tingling into the face, and general shaky-ill feeling on worst days). The sore spots tend to be short lived, couple of days, but they return.
There is a thing that can be called 'escape' GCA in which some symptoms are breaking through but not getting worse. Over time they will be controlled by the pred. If it is a flare they will get worse.
If you are just talking about one sore spot (and there is not also an issue of ear/eye pain you describe or anything else ) and it only troubles you if you touch it, then personally I would not think this is a reason to increase pred. You may want to monitor it - if it is a flare, things will develop. If it is a bit of GCA breaking through, it is likely to resolve. Perhaps spend longer on 10mg to see what happens. Don't forget pred may not take away all symptoms - I think the figure used is that you should expect to have at least 70pc decrease in symptoms. You are only a year in so are already doing really well. If you don't keep a symptom diary, it is worth doing so - it allows us to see patterns.
The 'recommended' rheumy in Surry prefers to see people in person for first visit but after that it is by phone. However, I noticed someone on the forum last year had a first phone conversation. Perhaps if he needs more he would say you would have to come in. X
The 70% global improvement in symptoms is the response looked for with the starting dose of pred as a diagnostic criterion. Only works if you are on enough pred of course,
I wonder if it could also be used as a ballpark figure for flares? I use it for me, anyway. 😆
I think anything that works for the person is great - shame doctors don't think the same way.
I had a fantastic response to pred once diagnosed and treated. Within two weeks around 90% resolution of symptoms, just minor residual symptoms left, improving daily, , and all gone within 4 weeks. I was started on a 100 mg hydrocortisone infusion on day 1, along with omeprazole (I think) infusion. Then 60mg daily for two weeks, reducing by 10 mg fortnightly till I reached 40, then by 5 fortnightly to 20, then by 2.5 mg fortnightly to 15, which is when the issues I’ve described cropped up. ( which in the end turned out not to be GCA related though that has taken time to establish) . Dropped back to 20mg daily and since then reducing by 1mg fortnightly.
Thank you. That is really helpful, and reassuring. It’s easy to get things out of proportion. Yes, it is only the one spot and only concerns me when i pass a finger over the area, Static touch doesn’t elicit pain. ie it is mechanical movement that does. It hasn’t got worse. and no other symptoms. The ear pain issue isn’t actually ear pain, it pain on the skull behind the ear, and I am now pretty sure that it is neck related, or sternocleidomastoid muscle related though back in July when it started the symptoms weren’t as clear as they are now. I have resolved to continue at the dose I am currently on of pred to see what happens, but will reconsider if it worsens. In the meantime I will also continue to pursue a private rheumatology consultation to see what is advised. I shouldn’t have to but the service here is virtually inaccessible. I have a family friend in Liverpool who also has GCA with PMR and she is able to call up her rheumatologist for same day or next day response!
Is your current rheumy based in Cumbria or do they come over from Newcastle?
PS, just found this guy in Leeds who I would give a whirl, I find the video quite impressive and he is a scientist and curious - always a positive.
Hi Viveka.
I have what I classify, average days, bad days and worse days. I can go From average to worse in as little as half an hour! Can happen If I do any light work around the house or even shopping. Waking up each morning usually tells me what the day is going to be like. Can have at times 3 naps a day!
The shakiness ill feeling is the absolutely the pits. Sometimes cannot hold any food on my fork and drinking through a straw with the glass on the table. I have banned my better half from giving me soup!!
Cumbria. Cumberland .Infirmary, Carlisle. I think he may be the only one and I know they are inundated, though for other things they aren’t so busy.. When my GCA first manifested I attended A&E and was amazed to see how few patients there were. I had a couple of subsequent visits and it was the same. The pred accelerated an existing cataract for me which was operated on within 4 months on the NHS not referral to private.
Yes, I gathered they had finally got someone there but he is bound to be overwhelmed. It really is a postcode lottery in the UK. Apparently, every single rheumatologist at Kirkcaldy resigned within a short time - mostly retirement so not just "I can't stand it any more" - until one said he'd defer his retirement unti it was sorted out. But there is a world shortage of rheumies, never mind the UK where so many have voted with their feet to head for sunnier climes.
One thing I don’t properly understand is that I have been told that it is not possible after being on pred for them to conduct US to see if inflammation is still present or has returned to the temporal arteries.
Since inflammation is the source of pain it would be helpful if that could be visualised and confirm flare / relapse if there are cranial symptomsand I don’t understand why it can’t be visualised once on pred . I’ve seen conflicting information on this in some things I’ve read.
Er - what nonsense! Of course it is possible and if the GCA is flaring they could well see something, We have at least one person who had been on pred for some years for PMR and Prof Mackie wasn't happy about her rather vague symptoms so did u/s on all possible arteries, including in the armpit for the brachial artery. Where she found the halo sign and LVV was diagnosed, Maybe SheffieldJane will see and answer.
The Gateshead rheumy my friend was under did u/s when she was at a low dose to be sure there was nothing apparent before letting her taper to zero.
Thank. Rheumatology nurse who spoke to me just after Xmas mentioned another US but i told her what consultant had said. in the summer . She seemed uncertain but to be fair to her it seemed she didn’t know much about GCA . Another thing to clarify in a private consultation.
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