Persistent headache

[bakis]

Hi,

I was diagnosed with Temporal Arteritis in 2019 and have been on a reducing dose of Prednisolone since then. I've been on 2mg per day for the past 6 months. Two weeks ago I developed a left-sided persistent headache which seemed to me to be the same as the one that originally led to my diagnosis.

After a week of it, I went for a blood test then called the consultant for advice. He said that the blood test was normal with no sign of inflammation and so he was reluctant to increase the Prednisolone. He advised Ibuprofen.

Since then, the headache has receded a little, though I am still aware of it. I'm at a bit of loss of what to make of it - I was originally led to believe the headache was a cause for concern needing urgent attention, but as I have no apparent inflammation is it ok to put up with it? Could it be unrelated to TA (though it's in just the right place)?

[HeronNS]

If the headache hasn't responded as an ordinary one would to ibuprofen, a better test might be to see if it responds to a higher dose of pred. You may not need a lot, nothing like early doses with GCA. However I also wonder if it might be related to a bit of adrenal insufficiency. Are you unusually tired? Do you have any other symptoms? It's relatively easy to find out if your adrenals are producing enough cortisol through a morning cortisol test.

[bakis in reply to HeronNS]

Thanks for your reply. The problem with Pred increases is that it takes so long to reduce again so I can understand, and partly share, the consultant's reluctance. Re the tiredness, I was a bit weak and wobbly for the first few days but that has receded with the headache.

[PMRpro Ambassador in reply to bakis]

There is no reason why you can't try going to a higher dose for a week to see if it helps. If it doesn't you can drop straight back to the previous dose. The same applies if it DOES work too - once the symptoms have eased, yuou can drop back to just above where you were as long as it is less than 10-14 days.

[bakis in reply to PMRpro]

Thanks. The consultant wasn't happy to prescribe a higher dose, and I don't have enough to take a higher dose for a few days, so I can't really experiment unilaterally!

[SnazzyD]

Where in/on the head is it exactly? Does it feel like it has a focus? Is it a fuzzy pain, or sharp or shooting? Are there any bits from your collar bones up that are tender to press on either side?

[bakis in reply to SnazzyD]

Thanks for your reply. It's a sharp pain, just above and in front of my ear and with scalp tenderness in that area.

[DorsetLady PMRGCAuk volunteer in reply to bakis]

Ears can be affected in GCA, but not sure this sounds typically that… is it worse when or after eating?

[bakis in reply to DorsetLady]

Hi, I'm pretty sure it's not in my ears and it hasn't been in my jaw this time - unlike a couple of years ago I had a return of the headache and it did affect my jaw after eating. I did go back on to a higher dose at that time.

[DorsetLady PMRGCAuk volunteer]

Think it needs a bit more investigating -and it’s a bit blasé for your consultant to imply it’s not a problem…inflammation can take a while build up. It would have been more sensible for him to suggest another blood test in a couple of weeks and for you to monitor your symptoms and then review. ..and symptoms override blood test.

As asked, do you have any other symptoms, or have your tried taking painkillers to see if they help.

[bakis in reply to DorsetLady]

Thanks for your reply. I agree re his response! However, his suggestion re ibuprofen was at least partially successful, when I take them they do take the edge off the pain. I will monitor it and will get back to him if it get worse. No other symptoms currently.

[DorsetLady PMRGCAuk volunteer in reply to bakis]

Thanks for reply , but you don’t want to take too much Ibuprofen- it’s not really recommended along Pred as it’s a NSAID but as you’re on such a low dose Rheumy obviously thinks it okay..

[bakis in reply to DorsetLady]

Yes, I expressed some surprise when he recommended Ibuprofen! I asked if it was ok with pred and he said yes, at this low dose.

[Joseph14612]

I am on Actemra ....13 weeks now, and down to 17.5 prednisone since April last year 2022...I have been weaning down and up because of headache, or so I thought....turns out it's a posture problem that gives me neck pain and headache....currently getting PT and I use a neck brace for sleeping to support the neck....headache is almost gone and will continue weaning.

[Broseley]

I would speak to your GP about this. Persistent headaches should be investigated. Tell him/her what the consultant said and how the ibuprofen hasn't got rid of it.

[bakis in reply to Broseley]

Thanks, yes, I was thinking that my GP would be my next port of call if things didn't improve. They are more approachable too!