Have had a tough last 2 years with elevated liver enzymes, bad fatigue, headaches initially balance problems and now a constant headache and forehead artery is sore along its length. Beginning of last year i had the temperal ultrasound but not conclusive. Into my 3rd week of constant headaches which are on right side of head around where tender areas are, (feels like stinging). My GP has seen GCA a few times and is open to the diagnosis.I have had long term psoratic arthritis on medication Leflunemide and Sufulsalyzin, was on methotraxate in the past. I was wondering if the arthritis drugs have kept GCA at bay a bit as I didnt experience constant headache till now.
What sort of indicators did some of you experience with blood test results ? i have blood test every 3 months so have some history to see changes. SInce the headache started 2 weeks ago my ESR and CRP levels are very high, and before this ESR was very elevated with CRP not as much. This was unusual as with psorastic arthritis normally its the CRP levels that are elevated.
Went to hospital emergency department yesterday, they couldnt help and were opposed to a GCA diagnosis quoting no vision changes and my temperal pain wasnt bad enough. Tried high flow oxygen , took blood test and sent me home.....
Reading a bit GCA doesnt always have the same classic symptons, i guess if i didnt have the constant headache i wouldnt be as concerned, i am concerned taking NSAIDS 3 times daily will end up causing other problems
regards
OZ
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Oztrax
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They need to know that headaches aren't always with vision issues. I have LVV rather than GCA, but one of my symptoms was terrible headaches and very high ESR and CRP. I was diagnosed via a PET CT though as by then they had run out of options having had every scan going. My liver was also affected but once on Prednisolone is started to reverse but not sure how that all is now. IIt Feels to me they are just looking at text book symptoms and not branching out on possibilities.
I think they are wrong and should be considering GCA - it doesn't always fit their textbook and if you are having visual problems then that is last chance saloon - once visual symptoms start it is said you have a week before risking irreversible damage to vision. But no-one presents with all the signs and symptoms.
Do you have tired/painful jaw when chewing? Try this and see what happens
Visual changes aren’t always there with GCA - and it’s a bit blasé to reject it mainly for that reason…and sometimes when they are, they can be devastating.
However, constant headaches need to be taken seriously as does the temporal artery -which is what many doctors zone in on….
Was a rheumatologist consulted by the ED personnel?
Personal opinion, your GP is correct and should perhaps prescribe steroid as a trial, and refer you to a rheumatologist…
Many of us don’t have all the textbook symptoms, but doesn’t mean we don’t have GCA…
The idea is to treat before the eyes start to become involved. I can relate to the stinging pain. What do they mean, not bad enough? What is their measure? Do you need to be incoherent with agony or is mere weeping enough for them?
It wouldn’t surprise me if your drugs have helped keep it at bay as after all these types are used as ‘steroid sparers’ and for some do work well or to some extent or not at all. Inflammation isn’t all caused by the same chemical processes so it depends on what your inflammatory ‘profile’ (not sure that’s technically the right word) is, as to how well a drug works. Pred is a really broad spectrum anti-inflammatory so works well on everyone.
You even have high markers! For some doctors raised markers are their main criteria for diagnosis though they shouldn’t be as some don’t have abnormal ones.
You’re right to worry about taking large doses of NSAIDs and they help to a limited extent if at all. Generally only the right dose of a steroid will help the pain.
Symptoms do have a theme but they do vary between people and it does depend which arteries have the giant cells in them as to which areas are affected the most.
been sick all day like flu, my GP wants biopsy because its the gold standard, he is away for a week and i am really sick and in pain ATM. Could not get relief from headache today. I will talk to him next week for another temporal ultrasound and talk about the PET/CT option, last head CT they didnt use contrast which i think was a mistake. Difference now from months ago is temporal pain follows a line like its an artey, before was more like select areas or spots. Iam 60 years old and male which also is a bit different from the average. I waited 7 hours in emerg dept, i couldnt do that ATM, been in bed all day.+
Difference now from months ago is temporal pain follows a line like its an artey, before was more like select areas or spots
Do you mean the temporal artery as mentioned before ? That would indicate it is affected by giant cells and would probably give a positive TAB.
Fortunately (although many think otherwise ) it’s not the one that directly affects sight-that’s the ophthalmic artery and is much deeper. But they all stem for the Carotid artery.
"my GP wants biopsy because its the gold standard"
Gold standard does mean what I suspecct he thinks it does! It is the GS because there was nothing better, not because it is perfect! In fact, the ultrasound scan is equally as good and even then, they don't always provide a 100% answer - if they are positive yes, it is GCA, but if negative, it doesn't mean it isn't GCA.
Definitely high steroids for a while, not sure whether Actemra is prescribed automatically in Australia if it is GCA,, it’s not quite that easy to obtain in UK.
I know LemonZest11 was on it, but she did have some difficulty with extending it at some time. Hopefully she’ll see I have tagged her and reply.
CRP was 33 and ESR 28, thats pretty high for me, when my psoratic arthritis is active it not usually over 20, and i can barely function. joints are pretty good ATM, creatitine marker a bit low as well. CRP in march (3 months ago) was 2.0
That definitely says to me that those arteries are compromised- might be an idea to take a screen shot and show to your doctors…
GCA is classified as a large-vessel vasculitis but typically also involves medium and small arteries, particularly the superficial temporal arteries—hence the term temporal arteritis. In addition, GCA most commonly affects the ophthalmic, occipital, vertebral, posterior ciliary, and proximal vertebral arteries.
thankyou Dorset Lady, i am also pretty convinced at this stage, but i have to say ibrufen doses keep the symptons (especially headache) under control in addition to my normal leflunemide and sulfasalyzin daily doses. Bit worried about high dose prednisone as i am type 2 diabetic
NSAIDs will keep the headaches controlled to a certain degree - but my concern is that if it is GCA then your sight is at risk. and that does required steroids - I know from bitter experience. and yes I can understand your reticence for high dose with you Diabetes, but needs must sometimes.
Plus the longer the diagnosis takes, the high the pred may need to be... again, personal experience - look at my bio.. slightly extreme, but factual.
DL i totally agree with you and i am concerned as well, will see my GP next week he will definitely get me a temperol ultrasound and a head CT with contrast, not sure he can approve PET scan may have to see a specialist
DL had a look at your profile post, i also have had unexplained shoulder and elbow pain, like very specific small areas where muscle attaches, thats been this year only. My jaw does fatigue after chewing but i think this was a while ago, scalp tenderness seems to change every few weeks, ie the stinging areas settle down but never totaly go away.occipital area behind ears has been pretty bad last few months and now the right\ temporal area is active. I have never had very high ESR levels, only CRP elevates when joints get sore which i thought was unusal when i saw blood tests last week
Apolagies to everyone on the vasculitis forum here, turned out I actually have a type of SCLERODERMA , mainly on my scalp. The painful area and lesions on my scalp are caused by this illness. Vascultiis can be a secondary problem caused by this, but it is a fybrotic disease rather than a vascular disease. I am tired, fatigued, constant headaches (better with lower blood pressure). But am not unhappy as I stopped working and have have basically semi retired, which is a relief. Intersting a lot of the vascultiis medications are also used with SCLERODERMA as both diseases are autoimmine related. eg TCZ,RTX, MTX . Mycophenolate is the exception which is also used for kidney transplant recipients to prevent organ rejection, butr seems to be the main medication for the skin side of SCLERODERMA
So if anyone experiences painful scalp and looking for a diagnosis , dont rule out that it could be SCLERODERMA related. Aslo another rare disease at 20 cases/million average.
"en coupe de sabre": sign of the sabre: LINEAR MORPHEA
Thankyou STILLS, it can be quite distressing not knowing what is wrong with ones self, especially as new symptoms appear and your health keeps getting worse, FYI SCLERO is as rare as GPA , 20 cases/million, rare diseases are rarely seen if ever by most physicians, and i noticed they always look for the absolute worst case symptoms to diagnose. Basically they are quoting from a medical text book rather than any actual real life experience with these diseases.
I have been fortunate as my GP has seen SCLERO ONCE in his 25 year working career, without this I would still be in the dark and this can lead to a lot of worry and stress especially if you cant work and earn an income.
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