Advice please: Hi, I posted 7 months ago when I had... - PMRGCAuk


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Advice please


Hi, I posted 7 months ago when I had reduced to 1mg and starting to have tiredness etc. I decided to go up to 2mg and have been on that dose since then until this week when I have just started the DSNS reduction to 1mg. During the 7 months we have moved home (very stressful), been to Australia to see family for 4 weeks (first time) which was great but a bit tiring. Over the last few weeks I have experienced a headache on left side of scalp and sore hair follicles. Sometimes I ignore it and it goes, or I take a painkiller and is disappears. For the last 3 days It has returned and is more intense and does not respond to migraine tablets etc. Do you think increasing my dose could help? If so, how much.? I intend to try and see GP on Monday if I am still suffering but any advice would be appreciated.

Thanks all.

4 Replies

I hate to say it but I think a confab with your doctor is required. And unless it gets much worse I personally would try to avoid increasing your pred above 5mg until you do so - it would mess up any attempt at PET scans which might well be available. OTOH - should you get ANY visual symptoms please go straight to the ER/A&E.

GCA can manifest at any stage - I hope it isn't, but you never know.

Urtica in reply to PMRpro

Thanks for your quick reply. You have confirmed my thoughts and I will take your advice.


I hate to tell you this, but I experienced horrid left-hand side scalp pains, which my Doc misdiagnosed as Trigeminal Neuralgia, and gave me codeine. A couple of weeks later, I suddenly and permanently lost the sight of my right eye. It was GCA, as it turned-out, and I should have immediately been given heavy dose steroids to avoid blindness. 60 mg - not just a few mg!

Have you had jaw pain? - another classic symptom of GCA.

You cannot afford to be messed about, my love. If your Doc doesn't have good knowledge of GCA ( and VERY may don't) - You must insist on a VERY urgent referral to someone who does. In the meantime, they have a duty to put you on 60 mg prednisolone - "Just in Case". It's as serious as that.

High dose steroids are horrid - but better than losing your eyesight Urtica. I was belatedly put on 60 mg in a bid to save my second eye. So far - So good!

Stay in touch Urtica - and Good Luck!


Urtica in reply to arthur463

Hi Arthur, thanks for your reply. Sorry you have had such an awful outcome.

I took your advice as this morning I felt worse so phoned out of hours GP service and someone phoned me back.

Discussed symptoms with her and we came to the conclusion it would be best to go to A&E at Aberystwyth.

They were very nice and I saw doctor within 5 minutes. She tested all working parts! And took some blood for testing. I was told blood results would be about one hour so we had a nice roast lunch in the hospital dining room whilst waiting!

The blood tests were normal. The doctor had phoned a colleague for advice and it was decided, just in case, to protect my sight I should have 3 days of pred at 40mg and go to GP next week to discuss result. I am now taking paracetamol and ibuprofen for pain. (No improvement so far.)

Will keep you posted.

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