GCA question

[Plains]

I am happy to report I am feeling pretty good and down to 5 1/2 mg if prednisone. My question is, does anyone else with GCA get a pain like feeling in their head and a feeling that something is wrong or going to happen. The feeling only lasts several seconds but it is unnerving. I think about a stroke when this happens. I am thinking of going back to a neurologist. I have had a MRI and a CAT a few years back. Thank you and have a good day!

[SheffieldJane]

I wonder if it is simply a manifestation of anxiety making you feel full of dread momentarily? I have experienced something like that probably linked to tapering and Adrenals, which can cause anxious feelings.

Perhaps you ought to see a Neurologist again. It involves pain and your instinct is telling you that something is not right. These feelings can be reliable.

[Plains in reply to SheffieldJane]

Thank you

[DorsetLady PMRGCAuk volunteer]

as  SheffieldJane has suggested could be anxiety - and quite likely at your dose related to your adrenals still stuttering. Anxiety is a typical sign of them nor coping as well as they should.

..and no, I never had any feelings/thoughts like that, but if I had I would have reached out to medical guys... so please do.

[Plains in reply to DorsetLady]

Thank you

[Dochaz]

I get this on occasion, a sort of pulsing, mainly in left temple area, on the edge of pain. It doesn't last long, a few minutes or so, and almost always when I'm lying down and trying to get to sleep at night. Lying on my back seems to help, but it's not my favourite sleeping position! I'm on 3.5 mg a day now (down from the 40 mg prescribed just over 2 years ago). Feeling ok, though I get fatigued easily.

[Plains in reply to Dochaz]

Thank you

[Temoral in reply to Dochaz]

Very similar to my journey and present situation. Now on 2.75/3. Hope we can all continue smoothly. 🙏

[Richmond162]

Hi. I am on 7mg steroids now. I have GCA also. I have it on left side. But I get pains now and again and get worried. I’m not sure if it is serious or not. My vision has not been impacted but I have to rub my temple and hope it is ok. So I don’t really know like you! Regards. Julie

[Raewynne]

Could be anxiety but I would be going to the Dr for a check up.Sometimes those feelings can be our body saying something is out of balance.Just get a check up anyway.

[sew-lady]

I think steroid taper/withdrawal is a long process. Definitely something to talk to your doctor about…neurologist or maybe psychiatrists. My symptoms of a flare with GCA headache, temple tenderness and most of all extreme scalp tenderness. I depend on God’s protection in all situations.

[Plains in reply to sew-lady]

Thank you for your response. I am ver in tune with my body. The feeling is always in the same area of my head. I know what a flair feels like. Hopefully my next visit to doctor can look into it.

[Lenore58]

I’m curious to know more about the sensation you experience…instead of “pain” you say, “a pain like feeling.” Is it milder than pain? More vague? Where on your head do you feel it and what side of your head were your original GCA symptoms?

[potterylady]

Yes, I get all kinds of pain in my head with GCA. Sometimes for a second, and sometimes full blown headaches that last until I take more steroids. Pulsing, stabbing, and aching electric shock types.

[Plains in reply to potterylady]

Thank you for your response

[PMR2011]

I found when I was tapering Pred that below 5mg I would get what I called phantom pains. Old wounds, long healed broken bones etc would briefly ache (which might even be too strong a word). Almost ghosts of the original pain which may have occurred years before. It was odd and did go away once I was off Pred.

[Plains in reply to PMR2011]

thank you. I have not raised my prednisone when this happens.. just hope it does not come back.