GCA flair?

[Plains]

I have been on Actemra since October. I recently reduced my prednisone to 1mg a day. I am starting to get sharpe pain, they only last for a second but come and go mostly at night. One night they actually woke me up. I notice if I sleep on my right side my head feels odd in the morning. It’s like a feeling that something is going on in your head. In addition to this, I will walk up in the middle of the night with my body aching, shoulders and hips, both hands have numbness, which I suspect carpal tunnel. I have had past problems with it before pmr, once I was on prednisone and wore hand braces it went away. My hands are stiff in the morning but all other body pain is gone.

I really hate the thought of going up with my prednisone. My main concern is my head.. could this be a GCA flair? I do have an appointment for a neurologist June 14th.

🌼

[DorsetLady PMRGCAuk volunteer]

Possibly could be a GCA flare -or perhaps your PMR flaring now you are down to 1mg -and if it is, the only way to get it back under control is to up the Pred…

At such low doses, 1mg can make a lot of difference-were you okay before you recently reduced?

[Plains in reply to DorsetLady]

I would still have some pain at night for a while but always felt okay after getting up. With my head I have no vision issues, it just feels like something is there. My ear feels a little funny too.

[DorsetLady PMRGCAuk volunteer in reply to Plains]

You do need to discuss with consultant then -and sort out what it is. Ears can be involved with GCA -along with other problems. Please let us know how things go…

[Plains in reply to DorsetLady]

My Rhumy had me go up to 10 mg for three days then said to drop it down to 5 Mg fir a few days then 3 ect. I woke up the other night to head pain but it only lasted a few minutes. I also felt a little discomfort while sleeping on my side with my right side of my head on the pillow. He said he did not think it was GCA.. I have an appointment with a neurologist in the 14th. Trying to get answers , it’s a scary feeling.

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Yes it is -and fingers crossed you can soon get an answer

[Sharitone]

Is it possible that your ear is making your head feel funny? Would it be worth getting this checked out apart from the rhematology and neurology issues?

[Plains in reply to Sharitone]

I am going to a neurologist soon. TY

[Plains]

the GCA symptoms last year started with my ear and head before my bison became blurry. I did go to an ear, nose and throat dr. I did contact my Rhumy yesterday and he told me to go to 10 mg for a few days, then 5, 3 and back to 1mg to see if the head issue clears up.