Sorry this is so late, I just wondered if any of you might be around to give me a word or two of your wisdom at short notice... GCA since last August, at which time I had a 6th nerve palsy and double vision, but luckily I kept the sight. 7 months later, Prednisolone down from 60 mg to 12.5 as advised by my hospital’s rheumatologist. Two days ago the double vision returned quite strongly for a couple of hours. Haven’t had it since. Yesterday I called rheumatology department and the message came back to go immediately to an eye hospital . Went to the nearest (Moorfields clinic within a hospital) where I’ve just spent 7 hours... they wanted to keep me in and give me a mega intravenous steroid injection. I declined ( it’s not “my” hospital) but am obviously going to contact my own rheumatology department first thing in the morning. But their advice was that I should go back up to 60 mg(while saying they were covering themselves). So...is this a flare? And if indeed my pred dose is too low, would I jump back all the way up to 60mg ? Am I being ridiculously cavalier by leaving it until tomorrow, and only increasing dose when I’ve spoken to “my” hospital or GP? Oh yes, and my markers were up a bit - last time they were checked they were low.
Apologies for any glaring naivety I may just have displayed.
Goodnight all! x
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Frewen1
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Hello Frewen1 perhaps our wisest are already in bed. Here’s my view though. This could well be a warning sign, that not everybody gets, that your eyesight might be under threat again.The treatment protocol is a high dose of Pred given intravenously and given the potential consequences I would have accepted it, gratefully. Even if it turned out not to be a GCA crisis, I would have thought it was worth accepting. I am not clear on your reasons for refusing. The doctors obviously thought it was warranted. I am so glad that you kept your sight before but surely it is still a significant risk. Time wise you are not that far into a GCA journey and are on a relatively low dose of Pred for it. Please treat this with the urgency it warrants! Best wishes Jane.
Jane, thank you. I read everything you all said this morning, and spoken to my GP, and have increased my dose up to 57.5. Am waiting for my rheumy to call, and wanted to go on her instructions, but have followed the advice. I suppose I wasn't in a huge hurry because the double vision only lasted a couple of hours, and now I'm just back to being as muzzy as is my norm for the past few months. Many thanks, Jane. Karen
Your post and Jane's reply sent me off on a little search for the guidelines. You should check the pinned posts, part way down there's a post by PMRpro with a link to latest guidelines. What's interesting is not so much the guidelines, which it appears your doctors have been following, as the thread of comments - that the proposed tapering plan and speed of tapering for GCA is too rapid. You are probably right that you don't really need 60 mg and start all over again. But Jane is probably right that you might need a strong pulse to stop the flare in its tracks, and then a more rapid taper down to a level significantly higher than your 12.5, maybe more in the range of 20 or so, where you stay for a while before tapering again. I only suggest these numbers as an example. Of course we are all different and protocol should reflect that.
That's brilliant, thank you. I have taken advice and gone back up to nearly 60 today, on general recommendation here and GP this morning. Still waiting to speak to Rheumy. I'll look out the other posts... Karen
Thanks so much, Greensleeves, yes I've put myself back to nearly 60 (adding on to 12.5, maths never brilliant) on all round advice plus GP, so when I finally speak to Rheumy its a fait accompli. Thanks, Karen
Would have given same advice as others - and taken the dose offered...just as a precaution.
I think you probably misunderstood - or they didn’t explain correctly - they were not telling you to ‘go back to the beginning’ per se, but to take 60mg for a few days to clear the issue...and then drop back down to a more sensible level..
Hopefully that is the advice your Rheumy team will give you as well.... please follow it, and keep us informed.
I had already gone to bed so didn't see this last night - but, being very blunt, yes, I think you were rather cavalier. If Moorfields felt the high dose infusion pulse therapy was warranted - they had very good reasons. They, of all hospitals. are probably most aware of the devastation of visual loss. It may not have been "your" hospital - but you had asked for their care and sometimes other hospitals offer better care than one's own, especially when they are expert specialist ones and in the room with the elephant - "your" hospital wasn't.
In fact, the pulse therapy has been shown in studies to result in a LOWER total dose of pred overall in cases of GCA and subsequent tapering is easier. GCA is known to be liable to flare in the first 18 months - I would suspect because of over-zealous tapering of the pred when the high dose infusions weren't used initially. GCA can develop in patients with PMR at any stage - after a few weeks, a few months, a few years. It doesn't make it less of a risk to sight. jinasc will tell you it took her 6 months to get to 20mg - a dose at which you would probably not have developed this problem. Your taper was just in line with the Quick approach - but even Prof Quick's paper admits their approach doesn't eliminate the risk of flare entirely.
It is hard on high dose pred, we all know that. And we also know everyone feels comfortable asking for advice here - but please everybody, if an expert hospital tells you that you need high dose pred as an emergency treatment, don't argue with that. There was one person on the forum who waited overnight to take their 60mg pred and lost the sight of one eye - when it is gone, it is gone. In their case it was an error by the hospital who first said he would get the infusion and then changed their mind and didn't explain how important it was to take the pred NOW.
Thanks for your customary straight talking, I was expecting it. As I've replied to the other kind advisers, I have put myself up to 57.5 today (why odd number? I was increasing from 12.5 and did it in bundles of five, forgot I could cut another one - anyway I'll make it 60 tomorrow. I have never heard the "pulse" expression before, and my reluctance yesterday was that I had the impression they were indeed saying I'd be back where I started, on 60mg indefinitely. (Actually it wasn't the Moorfields team who were suggesting the increase, in fact it was the A and E medics - I had to go through them to be referred to their Moorfields clinic without an appointment). And I just wanted to check with the rheumy first. I suppose she'll call me at some point as her department have left messages. But now I've gone ahead, and I shall carry on reading up about flares and slower tapering. Thanks, Karen
Frewen1 hopefully your sight is OK and you are now taking a higher dose and please never, ever take that chance again. Moorfields are world leaders on eyesight.
This next bit is long and in a way personal, so I apologise in advance.
Anyone with GCA must remember that it is your SIGHT that is at stake and once it has gone, its gone.
People with PMR must make themselves familiar of the signs of GCA as it is PMR's big sister, which medics have yet to fully agree with.
As PMRpro has said it took me 6 months to get down to 20mg then 'flare'.
I moved fast as it was at the weekend, however both my GP (who 35 years previously had a patient whose sight was lost and swore it would never happen to her again) and my Rheumy had warned me, don't wait at any price, go up to 40mg and then it is controlled.
They even insisted I carried a supply of pred everywhere I went. The first time I came down more slowly but still ran into another flare six months later , so back up to 40mg and slower down than ever. Eventually remission 5 years later and last.1mg on 31 Dec 2011.
A couple of flares is not so unusual for GCA in the first 18 months of diagnosis, not everyone encounters both I was just one of them that did.
Late on I met Ragnar and told PMRpro about his system of slow tapering, and although previously we had written articles on Steroid Withdrawal Problems (think coming of heroin etc), after meeting Ragnar we realised we need 'slow tapers' and the result was two plans, slightly different.
One expert did a small study on PMRpro's DSNS and published the result which was in favour of slow reductions.
It is difficult to get Rheumy's and GP's to understand and change advice, especially when it is coming from patients, whom with some exceptions who are not medically trained of whom I am one.
Before Covid struck, a research grant for a small planned trial to make GP's more aware of both PMR & GCA in the North East. Unfortunately that is on hold. Hopefully once the NHS has got back on track with all the backlog items it will start.
Anecdotally, since the tapering plans and patients following them it seems to me that the number of flares have reduced. But that it just my observation.
The golden rule - never more that 10% at a time - and when dropping a full 10% decide on a day to drop and then clear the decks for the next 5 days.
Once down to 10mg, then use one of the plans (all pinned on right hand side of the page) and only drop 1mg at a time using the pattern. If that 1mg is turns out to big, use a pill cutter on non-enteric coated tablets and try 0.5mg.
Over the years I have seen too many people lose sight either partially or totally. Knowledge is power and it must be passed on.
Thank you so much for that - as I've written just now, I've put myself back on nearly 60, will make it 60 tomorrow, and then hope by then to have been able to ask Rheumy how soon I can start coming down again. Because I am lucky enough not to have pain, it took the penny a long time to drop that perhaps this was a flare - because I don't know what else to look out for. (No pun intended). And the double vision only lasted a couple of hours, three days ago, and hasn't returned. However, I guess that was the sign. I am grateful for your story and information. Karen
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