What’s it all about?

[Cyclegirl54]

I should have kept quiet after saying last week I was feeling ok. Saturday morning woke to an intense headache, neck and shoulder pain , lasted till Monday when I felt I must ring the doc for advice. Had some bloods taken that am and an appointment with doc Tuesday am. I explained I had reduced from 20 to 19 mg using the DSNS. The doc has referred me to the rheumatologist again and I’m on 20 mg again. Bloods comeback ok. No issues with eyes. Headache feels like a vice either side of head. Trouble is, the meds and paracetamol aren’t really damping down the pain. Is this a flare? Do I need more Pred or just hunker down and pray? All thoughts happily received as it is getting me down.

[PMRpro Ambassador]

Apart from saying 20mg what did the doctor say? How long must you wait to see the rheumy? If the GP is concerned it is a flare of GCA then he should be sending you to A&E with a letter for them and the rheumatology department. Not waiting for a referral.

Bloods do often lag behind the development of symptoms so they aren't that significant and it could be a flare. Did you have a headache originally - is it similar? Have you been given a GCA diagnosis?

[Cyclegirl54 in reply to PMRpro]

The doc asked about other symptoms- I said ‘drilling headache, neck shoulder and upper arm pains. She said she would be writing to rheumy but haven’t got appointment date. I had similar headache and neck pains in June when I moved from 15 to 20 mg. originally started at 10 mg in early March but that was too low as was the 15 mg . I was getting on ok at 20 mg and started reducing 3 weeks ago.

[PMRpro Ambassador in reply to Cyclegirl54]

I think your GP needs to get her act together and do something. She managed to approach your PMR in a way no recommendations would approve (far too low a starting dose) and seems to be forgetting that at least 1 in 6 patients with PMR go on to develop GCA - though someone quoted a far higher rate the other day.

Writing to the rheumy will achieve nothing useful at present - suspected GCA is a medical emergency like a suspected stroke or heart attack. Would she "write to the specialist" if she thought you were having a stroke?

If the headache gets worse or you have any visual symptoms - don't wait for her, go to A&E and make sure you are taken seriously.

[Cyclegirl54 in reply to PMRpro]

Thanks . Will take immediate action if things get worse.

[PMRpro Ambassador in reply to Cyclegirl54]

Good. It may be nothing - but no headache like that is normal, especially if painkillers don't touch it. You already have PMR - so GCA is a possibility.

[morrison]

Funnily enough or perhaps not funny at all. I been bed bound for 2 days with the same symptoms. I feel as if the bottom of my skull is being squeezed in a vice. I put it down to a stress headache as going through a house sale and a divorce. I must contact doctor tomorrow. Hope you feel better soon. X

[PMRpro Ambassador in reply to morrison]

I think that is a very good idea - GCA likes the occipital area of the brain, the area just above the top of your neck.

[lizzie47 in reply to PMRpro]

That's vry interesting PMRpro.I have GCA and twice I have said to my Rheumie I have pain in that area when I have been reducing pred,the first time she said it was mechanical the second time muscular but I felt sure it wasn't either

[PMRpro Ambassador in reply to lizzie47]

I have to say - I am flabberghasted at some doctors' lack of knowledge about GCA...