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!
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Nethyman
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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.
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.
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.
As PMRPro says you should see a specialist. Are you saying that the Co-codamol acted as a painkiller? Again as PMRPro says Co-codamol is useless for GCA and PMR, so perhaps there is something else if it worked for you.
Co codamol clears my head pains and was doing so before I was diagnosed with GCA a year ago. Do you think I was mis diagnosed even though the blood test and biopsy showed that I had GCA
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!
So if you had a positive biopsy - no, you weren't misdiagnosed.
If it is of any help, I found that the Co-codamol masked the oncoming GCA pains in my head. This made the situation worse, as when the Co-codamol effect wore off (especially at night), I was then in extreme pain. I found the Prednisolone the only relief from the pain. This took between 45 mins to 1 hour to have effect. Sitting or standing up seem to accelerate the circulation of the drug (whether moving about also helps the circulation I do not know).
Please do read the leaflet provided with Co-codamol, as this is additive and the suggestion is that in time could add to headaches (if I have understood the situation correctly).
Like you I would go private if I could find a specialist in GCA around my area (West Midlands). How do you look up the national directory of consultants. I tried putting th phrase into google but with no luck.
I found the link from our local hospital website. It is specialistinfo.com/b_direct... . You need to pay £2.99 for 2 hour access. I found the 'quick search' box and entered 'Giant Cell Arteritis' which brought up about a dozen consultants. Then had to look which did private consultations.
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