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I am so confused with these symptoms. I have GCA, polymyalgia and cervical spondylitis, only been diagnosed about 6 weeks. I have gone from 40mg to 30 over the last 2 weeks and supposed to be reducing again tomorrow. The last week or so I have been getting severe morning pain in my head and neck which I am putting down to the cervical spondylitis as I have the crunching sounds in my neck when I move it. This is relieved by a pain killer and I don't have anymore trouble till the next morning after sleeping. I am still getting mild symptoms of the GCA creepy crawley sensations in my head. (is this normal after 6 weeks and is it an ongoing symptom?) I was under the impression that the steroids took away all the symptoms. I have also noticed when I chew I get pain in my neck muscles, I have not had that before. I get occasional neck pain which I think could be the polymyalgia but I am not completely sure. I am just so confused with it. My dr has left me to reduce again tomorrow to 20. I feel this will be ok but don't want to risk my sight in case these symptoms are to do with the GCA .

2 Replies

Regarding your head and neck pain in the mornings, have you tried different pillows for this? I had to go from two pillows to one in order to get some relief. I now use a memory foam pillow together with one more very flat pillow and I now only get occasional pain on waking - I usually wake feeling that I have slept in an awkward position. I did have to experiment to find the right one(s) for me.

The GCA symptoms do sound fairly mild and while some luckier patients are pain and symptom free while on steroids that is not usually the case for most of us. I have always had some background pain with PMR and the GCA tender spots on my head are still present after several years.

For the suggested reduction of steroids from 30mg to 20mg all in one go sounds to me like a recipe for disaster. It is a huge jump and not one which would be recommended. I would suggest that you contact your doctor again and go much more slowly down to 20mg to try and avoid a flare up of GCA. If your initial reduction was from 40mg to 30mg, well, again that is a huge reduction and could well be the reason for the continuing symptoms.


Thank you for the advice about the pillow, I squashed my feather pillow down when I went to sleep and and have not had the awful headache or neck pains for the last 3days. Thank you Polkadotcom.


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