Has anyone noticed breakthrough headaches in the evening? Prednisone dose is taken in the morning.

[USAGCA]

Hi. I am experiencing a relapse that came on after my Pfizer vaccine. I also have a shingles problem that I am managing with antiviral medication. I’m now up to 40 mg of prednisone after being down to 4 mg. I’m also on Actemra. I am still experiencing breakthrough headaches that reliably occur after around 8 pm. I almost never have a headache before 8 pm. Has anyone else has this pattern of headaches? My initial disease response to prednisone was more complete, no evening breakthrough. Thanks for any help.

[DorsetLady PMRGCAuk volunteer]

Hi, Unless you can pinpoint anything else that might be causing headaches (ie - your vaccine) could be the effects of your medication running low by 8pm.

Did they start immediately after vaccine ?

Did they start before your increase to 40mg or since?

If before, how long have you been at 40mg? If only a few days, may need a bit longer to get the flare back under control.

If it’s purely illness related then either more Pred or a split dose may help....but think you need to ascertain what is causing them ....so more info would help.

[USAGCA in reply to DorsetLady]

Hi. Thank you. The headaches feel like GCA headaches, complete with eye pain, skull, and scalp pain. It seems like the pains started right before the second dose of my vaccine or right after the second dose. I recall that it was actually the day of the second vaccine, and at that time, I was only on 4 mg of prednisone. I ramped up to 40 mg over a month, as each increase did little to control the headaches. My ophthalmologist says that after a week( that would be this coming Monday), if there is no improvement, I should taper down. He says that the cause would be less likely GCA. I will do as he says, but for me, these headaches are distinctive and feel exactly like GCA.

[DorsetLady PMRGCAuk volunteer in reply to USAGCA]

It’s okay for him to say that...but you know your GCA headache better than he does. I would be inclined to give it at least 10days to see if things improve...and to be honest IF they are GCA related, then reducing will just make things worse.

[USAGCA in reply to DorsetLady]

Agree that things would worsen if these are GCA headaches. The doctors always seem to throw a whole set of other headache triggers at me. However, I only have GCA headaches. That said, the timing of the headaches is concerning. Maybe I could have tackled them earlier if I had split the prednisone dose. I will continue with the 40 mg for a total of 10 days, but I will take 35mg in the morning (8 am) then 5 mg at around noon. If that helps at all, I might push the noon dose to 2 pm and see if it helps without much sleep disturbance.

[DorsetLady PMRGCAuk volunteer in reply to USAGCA]

Anything is worth trying....please keep us informed

[piglette]

Headaches are a known side effect after a Covid vaccine. I had my Astra Zeneca one on Wednesday and I now have this craving for ice cream and red wine! Apart from the fact the young dentist who did the vaccine managed to hit a nerve and I let out an impressive scream, ( I am not sure how many people left without their vaccine after that, ) nothing else untoward happened.

[PMRpro Ambassador in reply to piglette]

Now there's a side effect to complain about - icecream and red wine ....

[piglette in reply to PMRpro]

I must fill in a yellow card and contact Tim Spector about it! I haven’t given in to it though!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Oh...brave you!😊

[PMRpro Ambassador in reply to piglette]

Boring ...

[Chrisellie]

Is the Actemra by injection or infusion? If they are injections what time do you inject?

[USAGCA in reply to Chrisellie]

Hi. I inject Actemra once a week.