Diagnoses with PMR/ GCA (not confirmed by TAB) in May. Had a recent GCA flare much worse than the original symptoms, when trying to reduce from 20mg Preds to 17.5mg. Requested a referral to rheumatology, due to flare, but still waiting 2 weeks later! Seen an optician, who has confirmed no serious eye problems - although eyes bloodshot and swelling below the eyes in morning - both mainly to the left eye.
GP suggested increasing to 40mg (as per current guidance for flare), but effect did not last for 24hrs, so tried 50mg and I am now on 60mg again! This still does not work for 24 hrs, but lasts for 18-20hrs. Severe headaches drive the need to take next dose earlier (takes about 45mins to 1 hr for relief)! GP suggested using Co-codamol. Biggest mistake - painkillers mask the onset of the pain and as a consequence it is much, much worse when the painkillers wear off! In order to get back to taking Preds first thing in the morning I tried 50% dose in evening to cover 12hrs. This worked but the full dose for 24 hrs does not. I am now taking 30mg ever 12 hrs, which seems to be working, I bit of insomnia, but much better than the very, very serious headaches.
Does anyone have any knowledge of spreading the dosage of Preds over the course of a day to treat GCA?
Getting a bit desperate - not sure of my next move, either A&E or private consultation? Unfortunately my GP does not see me, in severe pain, in the early hours of the morning for which the only relief seems to be Preds!