My 0.5 mg per week taper (recommended by my rheumy and endo), is working well for me. My muscle pain has finally gone away, indicating that it was indeed steroid mylagia, not PMR inflammation, as they suspected.
I am at 3 mg and I feel a million times better, physically and mentally. The fatigue and brain fog has subsided, which I now also believe was the pred.
The only issue I am currently experiencing is really bad tension headaches. Its been going on for four days now. Paracetamol makes it go away, but it comes back four hours later. The pain is everywhere in my head, but largely in the back of my head. I also have a constant tightness in my jaw.
I do not have pain when I chew, and because the paracetamol takes the pain away, I do not believe it is GCA.
But does anyone know what it could be? It gets worse in the late morning, and continues throughout the entire day/evening. It's not as bad in the mornings when I wake up, so I do not believe it is bruxism or that I am grinding my teeth at night.
Thank you to anyone can help me understand why I am experiencing this.
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sferios
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This sounds so positive…..except for the headaches. You know that you have to be checked out for GCA, however unpalatable that idea is. You must get it medically discounted before you can proceed. The consequences of ignoring it are too severe.
This happened to me when I had got to 3 mgs of Pred for PMR. After a few days in the sun I began to feel unwell, not right, headachey. My non Cranial GCA was diagnosed by a Vascular Ultrasound Scan. I was immediately put on 40 mgs of Pred but also put on Actemra that got me down to 10 mgs in record time. I hardly had time to feel dismayed. Be safe, be sure. Push if you have to. My Rheumatologist is unusually thorough. Good wishes!
"If the pain resolves with paracetamol that would generally be taken to suggest it is less likely to be GCA. GCA jaw pain is claudication - it starts when the jaw is in use, chewing for example, and goes away when you stop chewing. One test is to chew gum at one chew per second for 2 minutes - if that develops pain, it may well be GCA. Swelling is usually in the temple - above where the side arm of your glasses is, not down in the neck."
Highly unlikely, mine was back in a much shorter time than that... - and after 4 hours even with paracetamol an ordinary/tension headache is likely to resurface...as you also say the jaw claudication does not appear with eating, then its looking less and less like GCA.
What it is though, not sure we can say.. as you've ruled out grinding your teeth - have you considered TMJ/TMD entirely -
It seems related to the sternocleidomastoid. Dull pain in my forehead with slightly worse pain in the back of my head on either side behind my ears. If I press that area on the right side, it's tender and hurts. Not skin sensitivity, but deeper pain.
Mild stiff neck and jaw tightness also. It reads like a classic "tension headache" with the sternocleidomastoid muscle involved.
I got this link from a comment SnazzyD made on someone else's related post four year ago...
I'm thinking that being on pred a long time may mask a lot of types of pain... and then when we finally taper into the low doses, that pain (whatever it was from ) finally shows itself. And then we worry if it is a flare, AI, onset of another autoimmune disease, etc.
And it's so difficult to communicate pain types.
In my case, having spent the whole morning researching, I think it might have to do with sleeping on my stomach. Lots of articles on how sleeping with your neck turned 90 degrees can cause pain and headaches. It basically tenses the sternocleidomastoid muscle... for hours each night. I'm guessing the pred was masking this pain. Then when I got down to 3 mg those 10 months of bad sleep posture effects finally hit.
Another thing to think about is this... let's say I panicked about GCA, and went back up to, say, 5 or 7 mg. The pain would have gone away and I might then have developed confirmation bias.
Just to add something into the mix...I was having this type of headache when I reached 3.75. I was waking in the night and plugging ear buds into my phone to listen to programmes for an hour or so. Stopped doing this...and headaches stopped...coincidence? Does this apply to you at all....Good luck.
Quick question. Have you had an eye test recently?
Whenever I need new glasses the first symptom I get is a headache right across the back of my head, combined with some pain over whichever eye is the worst affected. The headache's not there when I first wake up in the morning because my eyes have rested all night, but after putting my glasses on for the day, the headache begins. Slowly at first, but after an hour or two I begin to notice it, and it increases in discomfort throughout the day, unless I take a nap after lunch, in which case it reduces because my eyes have had a chance to rest for an hour or two.
For these eye strain headaches I find that painkillers are effective, but they don't cure the pain, just dull it for a while. So as soon as I recognise the symptoms it's off to the opticians for an eye test. Luckily for me, being an old age pensioner in the UK, eye tests are free, although the glasses aren't, and only this year I've had to fork out nearly £300 for new lenses in both my pairs of glasses due to one eye changing slightly and causing painful headaches.
Sorry your struggling with the headaches and I feel your pain . I am also dealing with headaches that are coming and going throughout the day and back teeth on both sides achey 🤷♀️ Also some nausea , saw GP yesterday who did a through exam and couldn’t find the cause . Paracetamol is sometimes effective but not always .
Like you no muscle pain at all and stuck on 5mg.
Would appreciate any thoughts on the following , this started after I had an intramuscular injection of Depo Medrone , Methylprednisolone 120mg 2 and a half weeks ago . Consultant said yes it can cause slight headache but only for a day or so .
Incidentally he gave it to me as he is concerned I may now have an Inflammatory arthritis as a couple of knuckles are red and swollen .
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New symptoms 
Follow up with Rheumy regarding GCA.
Jaw claudication
Jaw pain
Toothache or GCA
