Slight darts

[Headpain24]

As per my bio I was diagnosed with GCA in Oct 23. Treated initially with steroids tapered off and put on Roactemra everything going good thank god. In the last day or so I'm getting slight darts/thump in head not consistent but now and again . Their on the side I was getting the intial pain. Their enough to scare me but on feeling my head theres no tendernessto touch and the darts dont last literally only a second. My neutrophils were showing low so Roactemra was reduced to bi weekly. Question does anyone else get these darts (sorry dont know how else to describe).

[Gangley]

Hello and welcome to the forum. When I was first diagnosed I had these only I described them as a little man up there with a big machete pulverizing my brain. Days that I didn't think I was going to die, I was hoping I would. Very bad time. Once on Prednisone & Actemra, it took about 1 month but the stabbing went away. Good luck with your journey forward.

[Headpain24 in reply to Gangley]

Thank you so much for reply. Stabbing describes it much better brain fog wouldn't give me this word when I writing this lol

[DorsetLady PMRGCAuk volunteer]

I’d be discussing that with your Rheumy- you might still require some Pred as well. Certainly short term to get the issue (if it is your GGA) back under control

[Headpain24]

Thanks so much for your reply. Thought as much but! Was secretly hoping not to have to go back on steroids. Anyway needs must.

[PMRpro Ambassador in reply to Headpain24]

About half of patients need some pred, not a lot, 8-10mg seems common. It is because there are at least 3 different mechanisms that can create the inflammation in GCA and Actemra only works for one of them, biologics are very specific.

[Headpain24]

Oh brilliant explanation still learning about GCA

[SnazzyD]

It might be GCA revving up again due to more spaced out Roactemra and no Pred. However, darting pains can mean a jangling nerve and the trigeminal nerve comes to the face from the side. You can have inflammation of that due to other physical and viral causes, shingles being one. I get nerve pain at this entry point before a bad cold sore. If you can trigger it with touch or motion, it is more likely to be trigeminal nerve. I’m sure others here have said that their GCA upset this nerve with the separate inflammation in the area. Online it says it is rare for this to happen but can do.

[PMRpro Ambassador in reply to SnazzyD]

Online says a lot of strange things about PMR and GCA ...

[Headpain24]

Thanks for the great info. It's not sore or sensitive to touch like the time I was diagnosed with GCA. That's what had me confused. Anyway will keep an eye on it and get in touch with my rheumatologist. Just didn't want to bother her if it's a thing of nothing. Better to be safe than sorry.

[PMRpro Ambassador in reply to Headpain24]

Indeed

[DorsetLady PMRGCAuk volunteer in reply to Headpain24]

When you have GCA you always need to double check head pains no matter how insignificant you may think they are.

[PMRpro Ambassador in reply to DorsetLady]

double???

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Double check! Amended

[piglette in reply to Headpain24]

I think talking to your rheumatologist will be good. We are all surmising what it could be, but we may have got it totally wrong.

[Headpain24]

Thanks everyone for the replies all very much appreciated. Definitely will follow up with rheumatology and get my bloods checked too

[jarn in reply to Headpain24]

Congrats on getting off Pred in a year. I was on Actemra for 2 yrs and tapered down to 5mg before I stopped the Pred. But my CRP crept upwards steadily. So, back to 5mg until 6 mos ago and down to 2mg. You are dealing only with GCA..........not PMR, so perhaps not so bothered. My diagnosis for both was 2019 so still on a journey. Good Luck to you but do listen to the wise Ambassadors: any head/eye pbms should be reported.

[Headpain24 in reply to jarn]

Thank you so much for reply. I was attending a rheumatologist and had frequent bloods my ESR and CRP were down and still were at last blood tests. Rheumatologist had me slowly wean off pred did get headaches but I suffer with headaches anyway but to err on side of caution rheumatologist sent me for another temporal scan which showed inflammation to be clear. Rheumatologist was monitoring me while I was reducing preds. And it worked out fine I've been good up to this tg