I was diagnosed with probable GCA at the beginning of August, after suffering from 24/7 excruciating headaches in the right temple (never suffered with any headaches before) , jaw pain and CRP 52, and put on 40mg Prednisolone, which cleared my heachaches within hours !!
I started tapering at 5mg every week on 13th August , down to 20mg, and then 2.5m to 17.5mg in middle of September , when I started to get very small twinges in the right temple which were very mild and lasted only a second or two, these occurred about 5/6 times a day. Had telephone consultation with my Rhumy in September who increased Pred to 22.5mg., which cleaned head twinges. I stayed on 22.5mg pred until 28th October as had been on holiday, then had blood tests CRP12, and then had covid (probably reason for higher CRP) tapered to 20mg and due to drop to 17.5mg next week, but twinges in temple returned last week after only being own 20mg for a week.
Would you consider the mild twinges in the temple to be a flare or would a flare be more intense !!
Sorry for the long ramble but I thought background info was important
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hbp01
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Quite likely as you have reduced 5mg every week, although covid could well have caused a flare.
The problem with reducing weekly [although it may be thought to be easier than bigger drops with more time between the drops], you are not on each dose long enough to know if it is sufficient before you drop down.
So when you flare’neither you nor your doctor knows whether the crunch point was 35mg or 20mg -or any dose inbetween. That then makes it difficult to know what dose to return to, and thus able to get the GCA back under control.
I’d be inclined to treat as flare - going to 25mg for 7-10 days - although you can stay there for 14 days without impacting drop back down. See this link -
You might be able to drop straight to 20mg, but I think 22.5mg would be safer.. and stay there a month. From then you may be able to taper by 2.5mg until you reach 15mg, at monthly intervals…From there, 1mg a month until 10mg, then 1mg every 4-8 weeks. But, and it a big but only if no symptoms return..
Is it a flare? Given the speed at which you have reduced the dose - it wouldn't be surprising.
It isn't a flare of the GCA - that has been there all along and hasn't been touched by the pred - it is a flare of your symptoms because the dose of pred is no longer enough to manage the inflammation being created by the underlying autoimmune disorder. That may sound pernickety but there is a difference! You start with a dose of pred that is expected to be enough to manage the inflammation and then you taper the dose, a process called titration, to find the lowest effective dose, the lowest dose that manages the inflammation as well as the starting dose did.
You sensibly waited until after the holiday to start tapering again - but I would be inclined to give it a good interval after the Covid as well. I'd certainly stick at 22.5mg for another month even if you don't go back to 25mg. And in future, if you are struggling with 2.5mg steps, do 1mg. And if anyone claims it is too slow - it isn't slow if it works and you don't yoyo with the dose again.
Sounds like a very rapid descent which, as DL said, doesn’t allow for accurate pinpointing the effective dose for you. It doesn’t give you time to get over withdrawal symptoms either that can mimic the beginnings of a flare. This is the body adjusting to the removal of a powerful drug that affects every part of you. It usually starts in the first few days and lasts a few days to a week. Your first year is a vulnerable time for flares too.
For comparison, I was kept on 40mg for 6 weeks and then reduced about every 2 weeks to start with. It took about 5 months to get to 18mg with no flares during that time. There was no Covid then either.
Flares can creep back or crash the party. If the inflammation was already quietly building during the reductions symptoms could appear suddenly when it reaches a certain level. This is another reason why any withdrawal symptoms need to be cleared so you can tell more easily if it is a flare.
The taper plan was provided by my Rhumy, before I joined this forum, and I was pleased to be reducing down quickly.
I think I will increase pred to 25mg for 10 days (belt and braces !!) then reduce back to 22.5mg as advised for a month and hope that the twinges don't return, and then start a very slow tapper as discussed. fingers crossed that this will work.
This forum has been so helpful as naively I got my tapper plan and assumed that you just followed the plan to the letter and all would be fine, as flares were no mentioned of discussed !!
Trouble is, the PMR or GCA doesn't get the same memo!! It is a law unto itself and you can't predict whether that will work or not - sometimes it will but I think that while a speedy taper to 30mg is probably fine, after that you need to be more circumspect in most cases.
Completely agree with what the experts have said given the early stage of your GCA journey. You need to slow and steady taper.
For future reference, there is also a phenomenon to look out for called by my (well thought of) rheumy 'escape' GCA in which you can get twinges or flutters which don't get worse. The idea is that a bit of inflammation is escaping through the pred, but rather than building up, it will settle - though may be a warning to slow taper.
I have experienced escape GCA many times but also had three flares. It is difficult to know the difference although personally I find that stabs are ominous. Also, I find that a flare may chug along for a few days then it gets markedly worse quite quickly - maybe that's just me. It's helpful to keep a symptom journal to start to understand how the illness affects you personally. Good luck.
Twinge/Stab/Flutter accurately describe the pain in my temple, and they don't seem to get any worse so perhaps I am suffering from escape GCA !! only time will tell.
I am also suffering from blurred mid range vision and have done since soon after diagnosis.
Have had optic nerve check ups at hospital and all ok but blurred vision continues better some days than others., also told I have early cataracts. I have had new glasses prescription but no improvement. I am wondering if this is due to the Pred ? and what action I can take ?
Given that you have reduced quickly and have only had GCA for a few months, the plan you outlined for yourself above in '1 day ago' seems sensible. I was put on a very fast taper and then came to a halt for a few months to stabilise. For me it was around the 20 mark.
I just wanted to point out that 'escape' GCA is something to be aware of because I hadn't heard of it and I used to worry about any head 'goings-on' until rheumy reassured me. I don't think it's a generally used term. As I mentioned, keeping a journal can help identify any patterns.
Eye issues are always something to ask your doc and optician about. Since you have had this checked, what did they say it was?
Welcome...and you are at the right place. I started my journey a few years ago....and these amazing people taught me...supported me...you aren't alone if you are here...so glad you are💞
I increased Pred to 25mg a week ago today as advised but I am still getting the pains in my right temple !!
I had planned to be on 25mg for 10 days and then reduce but now unsure what action to take as 25mg doesn't seem to have worked. Do I need to increase to 30mg ?
Have you spoken to your doctor? Are you sure the temple pain is due to the GCA - not jaw joint problems for example? It might be worth contacting the rheumy dept and asking if the appointment can be brought forward, or at least advice.
Then you do need to speak to your Rheumy dept -do you have a helpline number to contact? Tomorrow. If you are concerned now, then ring the NHS out of hours number -111 and explain situation.
A quick update !! I spoke to my Rheumy yesterday and she is not sure if the stabbing pains in the temple are signs of a flare and thinks it might be nerve pain ?? She referred me for blood test to check crop as she says that will be raised if it’s a flare
Typically yesterday and today not had so many pains I am still taking 25mg pred but am taking 20mg early morning about 5 am and 5mg about 5 pm (self medicated after reading info on this forum)
Should get blood results in a couple of days.
She is quite keen for me to get back on the tapper plan but I think I will tapper more slowly not sure if she is going to like that !!
Did you have a biopsy? that can cause nerve pain for some time.
I hate to disillusion her - but CRP does NOT always increase immediately disease activity increases, it frequently lags a long way behind. Slowly the top experts are beginning to realise that - and that symptoms should ALWAYS trump markers which are unreliable either way.
As for "slow tapering" - it may SEEM slow, but sometimes it isn't slow when it works and there aren't hiccups and going backwards and restarting and - well, you know the rest!
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