I have been in remission from GCA for about 10 months. I went to A&E this week after persistent headaches for about 3 weeks, together with other new symptoms such as lethargy, a stiff achey neck, partial deafness, overheating in the day and night, and a very new upper back pain. At A&E my CRP was 11 and ESR 49, and they thought it was a GCA flare and told me to start pred 40mg straightaway. My rheumy is on leave, but a stand-in rheumy relayed a message via a nurse that my bloods don't necessarily indicate a flare, but that I should start on pred anyway for 2 weeks. The pred worked within hours on the stiff neck and back pain, and next day no more headache, but ear problems persist - no earache but they keep filling up as if I am wearing ear plugs. The GP has checked my ears and finds no infection. I have a FTF appointment in early June with my rheumy. Should I just keep taking the pred just in case?
GCA with normal CRP but high ESR?: I have been in... - PMRGCAuk
GCA with normal CRP but high ESR?
There definitely can be ear involvement with GCA. They really shouldn’t leave you dangling when the consequences can be so serious. I would be inclined to plan for a day in A&E in the great hopes that your A&E got the memo about treating GCA symptoms as a medical emergency. Good luck!
I think I would keep on with the pred with that history and those symptoms. What do you mean by early June? Does the 2 weeks of 40mg take you to then?
As we know raised ESR don’t necessarily mean GCA, but they should be taken into consideration with the symptoms which are suspicious.
As PMRpro asks will you see your Rheumy with the 2week period -if not what are you supposed to do at the end of the trial?
As per my reply to PMRpro, nobody seems that interested except A&E who were very caring and spent a lot of time with me explaining my blood results. They would have referred me to their own rheumy depart under the Fast Track 5 day rule. But I was previously with them, it didn't work out for me, and I got a referral to my current rheumy, who TBH hasn't much time for me or my GCA.
Not good enough from your own Rheumy - something needs to be in place after 2 weeks.You shouldn’t be in this situation, but can you get GP to chase up on your behalf.
On another point, if your GCA is in remission why are you still under Rheumy?
She planned on discharging me this June, but may have to rethink that now.
Definitely!
Time to demand an emergency referral to someone who DOES care and takes the threat of GCA seriously. And an enquiry as to WHY you haven't been seen under the fast track system. Which hospital is involved?
pubmed.ncbi.nlm.nih.gov/314...
Patient-reported involvement of the eighth cranial nerve in giant cell arteritis
This might help - download and take it with you .
I would definitely continue the pred~! Some months back I flared to about the same height as you, I was temporarily off Actemra so it showed up. My rheumatologist raised me 40 mg immediately. ?? I think it was last fall....I am presently on 9. Not being safe is very hard to undo...if not impossible.💞
Sound advice. Thank you. I so wish it isn't GCA, but then I think it better to treat it while it simmers rather than when it is boiling over. Did you also have symptoms that alerted you all was not well?
"I think it better to treat it while it simmers rather than when it is boiling over"
GCA must be taken off the heat - using pred. Unpleasant as high dose pred may be - once the sight in one eye is gone there is no going back as it is irreversible and there is a 50/50 chance of the other eye going as well within 2 weeks.
I wonder if there is a way to prove or dispprove (e.g. by further bloods) if it is GCA? My symptoms have more or less abated, except for my hearing loss which continues to bother me daily. I have scheduled a further blood test for a week before my rheumy appointment, as instructed.
Not really unfortunately - unless there is a positive biopsy or ultrasound scan then it is based on symptoms. And even those may not necessarily show anything. Once you are on a decent dose of pred even the blood tests that add to the suspicion become of less value - pred suppresses the inflammation and that, in turn, means the blood tests normalise.
I did wonder what another blood test would prove if it normalises. Could pred suppress symptoms of other non GCA types of headache or inflammation?
To some extent yes - ESR is a very non-specific test, it can be raised for all sorts of reasons. The normal CRP doesn't necessarily mean much, it can be normal in up to 20% of GCA patients. There are other causes of the GCA symptoms affecting the head which might improve with pred - some forms of inflammatory arthritis affecting the neck for example, I had a friend with a GCA/PMR diagnosis that turned out to be ankylosing spondylitis but it also improved when she was on enough pred.
If the plugged ears have only just begun could it be allergy related. I've suffered yrs and yrs of eustachian tube dysfunction due to sinus issues. I've had so many perforations in my left eardrum and had to have microsuction to clear all the muck away. since being on Pred haven't had any issues whatsoever with my ear. If and when I ever manage to get off Pred no doubt the problem will return...been brilliant to have clear ears.
We do take clear ears for granted don't we, until something goes wrong. My hearing loss started very recently, a bit after the persistent headache. My ears - sometimes both at once, other times one or the other ear - feel like they are filling up, as if I am wearing ear plugs. That lasts an hour or so, then they normalise for a while, and the cycle repeats itself. I have tried the Valsalva manoeuvre but that doesn't really work much. I do suffer from bad catarrh at this time of year so it may well be allergy related as you suggest. I am just clinging to the hope that it will resolve itself in time, and it isn't GCA that has possibly done permanent damage to a nerve. Unfortunately, unlike with you, the pred doesn't seem to be helping so far.
I have an update. My GP has prescribed me to return to 60mgs. for the suspected PMR and additional GCA symptoms I have been experiencing. I finally had 2 days of relief. My question is he has scheduled me for a non-contrast brain MRI later this week. With the prednisolone at 60mgs. for going on 2months now is the MRI warranted or will it be another non-inclusive test? I don't take these tests lightly. I know there has been previously discussion on this forum. Any suggestions? My history is all documented. Thank God that my GP who actually treated me for PMRinitially, believed my additional GCA symptoms and relied on mine and his judgement and continued my dosage of 60mgs. after the Rheumatologist cut my dosage down to 9mgs. I value the warnings I've learned here and believe my early intervention may have saved any further complications, especially my eyesight. I've had another exam by a different Ophthalmologist another negative but she suggested a possible tumor. Scary thought. Too many complications after my cataract surgeries. I was doing so well. Any comments appreciated.
@
That is at least the safer option. I don't know about the MRI - really don't know much about its use in GCA but it isn't that usual, possibly because of the time it takes to get one done,
However - use of corticosteroids is clearly stated here as interfering with the results after as soon as 5 days - but doesn't mention dose that I can see in the abstract. You have symptoms now at the low dose - I don't know if that means there will now be signs.
pubs.rsna.org/doi/10.1148/r....
Clinically speaking, symptoms plus response to steroids is thought to be fairly conclusive
As always you came through for me. Answers my question as to compelling my decision to opt for further investigation. Very interesting non-contrast versus contrast MR. I will contact GP and refer him to this article. I just hope the steroids will not interfere with the results. Believe me I would like to have a more positive diagnosis. Wish me luck. A confirmation of GCA is certainly not what I'm hoping for, but all this confusion is really wreaking havoc on my quality of life.
Everyone would like a more certain diagnosis!
Thank you for your continued support.
I too had ear pain including feeling stuffed up. I was diagnosed with infection of the ear canal, AKA swimmers ear. I've had swimmers 3 times since GCA diagnosis.
I'm a bit prone to swimmers too which always brings some earache, but no loss of hearing. But this is the opposite - I have no pain, just loss of hearing. I had hoped it was an ear infection treatable with antibiotics, but GP examined my ears and said all looks well. Lying down seems to make it feel better, so a good excuse to be a bit lazy for a while!
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