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!
The recommended dosing is as a single dose and I have never seen any specialist advice about splitting the dose in GCA.
I have to say - I'm appalled you haven't been sent to hospital and the rheumy as an emergency by your GP. Who made the original diagnosis of GCA? Was that your GP? Because of so, he should have referred you as an emergency then. Under the circumstances, he should have pressed a letter in your sweaty little palm and called the rheumatology department and said he was sending you in. Co-codamol is useless. Added to which, to have reduced from 60 down to 20 (and less) in 3 months is far too fast - you really need someone who knows what they are doing and soon. Because whoever told you to do this doesn't know much about GCA.
This paper will give you a rather better idea of a reduction from 60mg - from a top expert:
You wouldn't have got to thinking about less than 20mg for 5 months - and that only providing all symptoms were as good as they were going to get in 1 month at 60mg and providing you hadn't had a flare in the meantime. Even with this timetable people have flares.
A study a couple of years ago showed there is still evidence of inflammation after 6 months at above 20mg - even though bloods and symptoms are apparently OK. As long s there is inflammation, the potential is there for a flare.
Thank you for the response.
I previously passed a copy of the Quick/Kerwan paper to my GP, who made the original diagnosis.
Taking 60mg did not last for 24hrs, so I was 'overdosing' by only going 18-20 hours before severe pain and having to take another 60mg. Using the split dosage is working for me. By the way my GP only recommended 40mg (present guidance for flare), I took the decision to increase to the original 60mg and follow Quick/Kerwan recommendations.
The GP suggested Co-codamol to deaden the pain to get me through the 24 hours for the next full dose of Prednisolone. Serious mistake - unbearable pain.
After 2 weeks still waiting for NHS referral. Which leads me to believe that these people do not fully understand the seriousness, so I am looking for a private referral elsewhere, to someone with specialist knowledge. Sadly the NHS system has failed for me. Probably needs an official complaint, so that others do not suffer in the future.
GRRRRR!!!!! Your GP should have referred you as a medical emergency - just the same as he would have done if he thought you had had a stroke or heart attack.
If the biopsy was positive - you have GCA. The blood test shows not a lot - just there is inflammation somewhere in the body and there are many possible causes. But a positive biopsy is 100% proof positive that no-one will be able to criticise in the future - that is the one good reason for doing one, in the hope!
You certainly need to tell your GP what he should be doing - it isn't too late, he can call the hospital NOW and send you. Free, gratis and for nothing as we used to say.
You are unlikely to find someone who specialises in GCA, it is too rare for that. Where are you? -ish that is, maybe we can direct you to someone good.
I've given my GP the information, asked for a referral, but still none forthcoming after 2 weeks of the flare. Too late for a biopsy, after taking Prednisolone since May.
I've now found a solution that works for me, until someone convinces me otherwise.
To be fair to the GPs, they are following official current guidance, not a research document, which may or may not be better practice.
To find people specialising in GCA, search the national directory of consultants, which contains two names in Scotland (more in England). I am currently in conversation with the Edinburgh Clinic, but they can only offer an appointment in early November.
I will speak with my Medical Practice on Friday and consider the options.
Where are you? You know there is a Scottish charity don't you?
I am in the Highlands of Scotland (Nethy Bridge hence, 'Nethyman')- local hospital is Raigmore, Inverness.
Yes, I have been in contact and will be meeting the Scottish Group leaders, at their invite, at the event to promote the proposed PMR International Guidelines in Glasgow on 30 September. We will be discussing how I can help promote better understanding of PMR/ GCA in East Scotland and the Highlands.