Headache for 2 weeks

[nallufl24]

I’m down to 4 mg prednisone and Actemra monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me. I took a Tylenol 45 minutes ago. It eased up a little but is still there. I’m going to call doctor on Monday if I still have it but what is your opinion? Could it be withdrawal, adrenal insufficiency or flair? I have GCA

[Purplecrow]

Food for thought here... my only notable symptom of Covid was persistent headache...not severe , but nagging. Regards, Jerri

[nallufl24 in reply to Purplecrow]

That’s interesting. I have an at home test. I’ll try it

[Purplecrow in reply to nallufl24]

Good luck💜

[orangemax in reply to Purplecrow]

Weird questions! Are we hoping it IS covid or hoping it's NOT???

[Purplecrow in reply to orangemax]

Good question. Hope the outcome is good

[nallufl24 in reply to orangemax]

Of course I’m hoping it’s not Covid (it’s not). Just looking for what it might be

[orangemax in reply to nallufl24]

Nallufl24, of course you don't want Covid. And I wish you only the best outcome. My point was, sometimes Covid would be the lesser of two evils if it's not a serious case.

[jinasc]

Noticed you were diagnosed in July 2021 and that is only 8 months and you have done well.

I would go back up to at least 5 mg and that then gives you a chance to hold it, if it is a flare till Monday but do make sure you talk to him/her on Monday.

If you experience over the next two days, any sort of vision disturbance, don't wait till Monday head for ER.

[nallufl24 in reply to jinasc]

Will do. Thanks

[DorsetLady PMRGCAuk volunteer]

Agree with jinasc …

[PMRpro Ambassador]

Only half of patients in the clinical trials were able to get off pred entirely. There are 3 different mechanisms which create the inflammation in GCA and only one of them responds to Actemra. I think the monthly infusions don't appear to be quite as good as the weekly injections in controlling the inflammation.

I am amazed how many doctors appear blissfully unaware of this fact!

[Hidden in reply to PMRpro]

I wish I could show my doc some of your replies re PMR/GCA. They all need educating with both of these diseases. They don't seem to realise how serious they're, particularly GCA, so shouldn't insist we get off the Pred asap. Since my rheumy discharge me (bad mistake) I've now got to go through all the red tape of a referral back to him. Mind you I seem to get far better advice from the ladies on the forum. Because I mentioned this to him I think he thought, you seem to be doing okay so no reason to keep coming to appts. I may have to pay again to see him privately to get back on his NHS list, as referrals seem to take forever these days.

[nallufl24 in reply to Hidden]

I agree with you. Once I got to 10 mg I was no longer in a hurry to get off pred but doc seems to think differently

[Hidden in reply to nallufl24]

7mg for me at the mo.....each mg I'll be staying on for a month, but only tapering by 0.5mg at a time....will take all of this year to hopefully get down to possibly zero, but not holding my breath. Been on them since Dec 2019.....did well until I reached 6.5mg and GCA showed up again.

[Maxslady]

I think you should consider the type/location of the headache. My GCA caused throbbing in the temple area specifically and just before diagnosis would wake me at night. Also, as the days went by, they increased steadily in intensity to the point where they could not be ignored. My temples actually had sore spots. I have never had a headache like that before. I have had a few headaches since diagnosis while reducing pred, but they seemed to be in the sinus area and went away with acetaminophen. Of course, caution is always best with this disease, so be sure and consult with your physician.

[Hidden in reply to Maxslady]

That's what concerns me about consulting with GP's over GCA.....my doc hadn't got a clue. My headache was a weird one. It would start up at the same time every morning at 2am...it was a whirling type would always be in same place at right side of head near the top that became intense the longer it went on. Scary disease due to potential loss of sight. I've suffered a bacterial meningitis headache and it compared with that

[Grammy80]

Totally agree with jinsac. A personal aside..my rheumy wants to get me off pred but I've been on fairly high doses over a two year plus period. It is physical issues that are motivating him and we had been going down by 1mg per month with no issues. My eyes and optic nerve on my right eye are examined each month by a neuro-ophthalmologist who sends his reports to the rheumy, Dr. Jenkins. After reading the reports he was big enough to say, we need to slow down. If I get to 5, at 10 now, I'm parking my car!!!! Wish you the best...💕

[nallufl24 in reply to Grammy80]

Thanks. I prefer to go slow now that I am below 10. I’m definitely not reducing the way doctor wants as long as I have theses symptoms

[Grammy80 in reply to nallufl24]

Wise gal!👍