Hello, I have had 24/7 severe head pain - vice grip and really sore inside head (mostly 8 of a 10 pain scale) for 2.5 years. Not a headache since it never leaves. Prednisone gets it down to 5 or 6. Also have pain medication which doesn’t work as well, but helps get down another couple of levels through the day).
Also have jaw claudication and severe fatigue.
Never had biospsy because no one believed I had it and I was always on prednisone. Would an ultrasound show positive (if I was positive) regardless of prednisone? Or any other test?
Lastly, do any of you have deep fatigue? Everything seems harder? Weakness?
Thank you.
Currently at 17mgs.
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kellykel
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"Limitations of ultrasound for GCA include the fact that it is investigator-dependent and usually requires someone with expertise in vascular ultrasound, and that the sensitivity falls rapidly after 4 to 5 days of steroid treatment, so it's necessary to have the infrastructure to obtain scans early."
So too late for ultrasound & back to measuring the bloods; CRP & ESR.
About 1 in 5 patients with GCA do not have raised blood markers - and this is even more likely with a patient taking pred for PMR. Unfortunately there is quite limited availability of the u/s sound test, even in the US.
GCA is fundamentally a CLINICAL diagnosis - on the basis of signs and symptoms and response to pred. TAB or u/s are just the icing on the cake. The symptoms (all of them) you describe are absolutely typical of cranial GCA (affecting arteries in the head) so why does nobody believe you have it? Especially if you need 17.5mg after over 2 years of PMR? Any patient who cannot reduce the pred dose without problems should be further investigated.
However - there ARE other things that could cause similar symptoms and they should be investigated for. One is ankylosing spondylitis - which can present similarly to PMR - but the neck involvement can cause reduced blood flow to the jaw and brain.
I think you need to find another doctor who WILL listen and look for something. You are in the US? Are you under a rheumy in an office? Is there a large university hospital within reach? Or a Mayo Clinic for example?
I have a clinical diagnosis from a compassionate neurologist who sees no other reason than GCA. Everyone is perplexed why I can’t reduce the prednisone. I have spent thousands of dollars at Mayo and they say it’s unlikely I have GCA - I have many of the symptoms but as you say, my inflammation markers have always been normal. And I was 52 at the onset. Mayo says I have a chronic pain loop. There’s a term for it but I can’t recall.
They said they did not know what it is I have and tested all they could think of.
So, I am back with my neurologist and surviving the days best I can.
So your markers are normal - that is the case for up to 20% of GCA cases. I'm flabbergasted that the Mayo is so obstinate - but you can always be unlucky in the rheumies you meet. There is a media report I often quote of a 37 year old man who died of a stroke and was found to have had undiagnosed GCA - depressing I know, but GCA in a 37 year old male would be said to be impossible by many blinkered traditionalists!
Did they do imaging of your spine for ankylosing spondylitis? That CAN mimic GCA and can be very difficult to establish in the early stages. Is your neuro aware that tocilizumab/Actemra is now being used in GCA? If it is GCA that would probably help a lot - if it isn't, it won't. Thank goodness you have a good neuro.
Do keep in touch and let us know how you get on. I wish I could do more.
Two and a half years is a long time to put up with that level of pain - and if it is GCA rather 'risky' as well to say the least - I'd be taking PMR pro's advice if I were you !!
Can't speak to the GCA but I do know that pred makes me feel weak. I can't walk for long distances and I look at activities and know they are too much for me. You have my sympathy dear at that pain level for so long. Wishing you well today 🌸
What an awful situation to be in!! Often as well with constant pain we sometimes feel that we can't advocate for ourselves anymore especially when no one seems to believe you or recognise the predicament that you are in,
I was older than you when my PMR morphed into GCA. Being younger though makes no significant difference as PMRpro has already pointed out. I too had no raised blood markers, I had terrible headaches which were like hot rods boring into the sides of my head. There was no temple pain and no raised arteries in that area. I too was in the position that you find yourself in with no one really believing that I had GCA.
I went to see a Consultant privately who confirmed that I had cranial GCA. I too like you found that 17 and later 18/19/20 mg did not control the pain and I ended up on 21 mg which controlled the symptoms. I also could not have any tests done because I had already been on steroids for over a year.
I would really urge you to pursue this. If you have someone else to go with you to an appointment then take them for support. Can you be referred to another Rheumy? Do you always look in control, well presented etc? Sometimes this means that they have no idea of what you are going through. Two and half years is just too long to be going on like this and you are probably doing more damage to your body because the inflammation is not being controlled. I eventually,once the inflammation was controlled,was put on a steroid sparer but of course if you had the diagnosis of GCA, was put on the right dose then you could consider Actemera . You are a bit in no man's land at the moment and need to have a firm diagnosis to move forward. If they don't think this is GCA what do they suggest it is? I do hope you will be able to pursue this, perhaps with help and move forward. Let us know how you get on. Jackie
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