GCA Newbie and my first post. Diagnosed 4 October 2024. Classic text book journey so far. Hitting my first major bump in the road and you guessed it, tapering. Started Prednisolone at 60mg followed by 3 intravenous interventions for jaw claudication. Gradually reducing, as from beginning of February down to 15mg. I’ve persevered with significant increased fatigue and being away with the faeries since.
My question to you lovely informative ladies is, should I carry on and hope my body adjusts or increase my prednisolone do offset the GCAs attempt to upset the Apple cart.
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Raisinwheat
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Firstly would say if you are down from 60mg to 15mg in the space of 5 months, then in many peoples opinion, that isn’t gradual.
Reducing from 60mg down to around 25mg is relatively easy, but once you get to 25mg, and most certainly 20mg you do need to ease up considerably. I know what the guidelines say… but they are only guidelines and many come a cropper at some time or other. I’m guessing 10mg every 2-3 weeks down to 20mg or similar?
Can you recall last time you felt okay..really okay- and can you confirm your tapering regime from 30mg to 15mg. You need to return to 20mg at least..and hope that’s enough… and from then on 1mg a time.
There’s a lot more to managing GCA -than just reducing the Pred and hoping it goes away [even though from my view I think it’s easier to cope with than PMR]. I will go into remission, but in its own time, so you do need to learn to manage both the disease and the medication.
And no, you can’t carry on and hope it will resolve itself… GCA is prone to flaring with first 6 months, so you need to get things back under control.
Your mention of fatigue indicates it’s not fully under control… and being away with the fairies is probably due to high doses of Pred… which should improve as you reduce them..
There a lot more info about GCA in the FAQs -so maybe have a look -
I was on 60mg for 4 weeks, then 50mg for a week and 40 mg for a week 30 mg for the next week. Currently reducing 2.5mg every following month. I was doing relatively well on 20mg, so January would be when I last felt okayish.
I am struggling with deciphering what’s GCA and the effects of pednisolone. The whole thing is a massive learning curve. I read anything and everything I could and promptly forgot most of it.
I’m waiting for a call back from the Rheumatology nurse this afternoon also. I’ll keep you updated.
Being at one for dose only a week is bonkers in my view - it can take at least 2 weeks and sometimes longer to know that dose is sufficient before you drop.. and doing it that quickly you can get down below the dose needed before you have chance to realise it. Then it’s more difficult to get things back under control.
Would stick with my suggestion of back to 2omg then 1mg a time then… see what Rheumy says… hopefully something similar- perhaps to 25mg? Who knows..
..and yes you will forget things -one of the reason I say in my intro post -hang on to it and come back and re-read as many times as you need for it to make sense… 🤣
What in particular are you struggling with symptom/side effect wise..just tell us and we can help.. why we are here.. and many of us have been there, got the t-shirt blah, blah, blah…
Hi Dorsey Lady, one of the rheumatologist doctors just got back to me and confirmed everything you said. Going back up to 20mg and an extended taper by 1mg. She’s going to update my consultant to the new plan.
Thanks once again, my husband says I’m very fortunate to have this forum and I totally agree
The reality of this condition still hasn’t sank in, still in denial methinks 😱
Always good when the medical experts agree with the non-medical patients/ex patients… shows we’re all getting something right… 😊.
It does take time to accept these diseases- and denial is very common [understandably] , but the sooner you realise this is your “life” for a little while the easier it is to get through it.
Have to say my started was chequered - but once on correct treatment I didn’t have many issues.. and it didn’t stop me getting on with life…
Same boat as you, October 10th officially diagnosed, and was put on 60 mg, trying to get to 10mg in March, as my Rheumy wants me there, however going to 15mg I am having trouble big time, so back up to 20 every now and then, This week I picked up some 1mg Pred and going to taper from 20mg down in ones starting tomorrow. It's hard, feels like I am sick each and every day! Waiting for improvement. Good luck.
Have to say your Rheumy needs a reality check…they might be following suggested taper, but it doesn’t suit everyone.. and it does say in all the paperwork it should be adjusted to each patient’s individual situation - something they very often ignore.. and it’s a well known fact that GCA is very likely to flare within the first 6 months…
Hopefully your plan will work… and in your own time [if allowed]… good luck.
Your rheumy may WANT you down to 10mg by March but that isn't how GCA works. You will need ENOUGH pred to relieve the inflammation as long as the underlying disease process is active and that can be for more than 18 months - DL points out that GCA often flares in the first 6 months, almost always because of overenthusiastic tapering, but commonly can flare for as long as 18 months. The pred cured nothing - not even at 60mg, the high dose is to combat the existing inflammation quickly to reduce the risk of visual loss, after that you taper or titrate the dose of pred to find the lowest effective dose. But however slowly you taper, you need enough pred to deal with the inflammation created by each day's new batch of cytokines shed in the early morning.
If the rheumy wants you to get to 10mg in 6 months - then they should have put you on tocilizumab/Actemra as a steroid sparer. Because that is the sort of rate of taper you might manage when on it, not on pred alone. If you could taper like that without Actemra, then they wouldn't need to spend all that money on a very expensive medication.
I was on 60Mg for 2 weeks in July then 50mg for about 3 weeks. The proposed schedule for reduction at 10mg per fortnight thereafter would have taken me to 10mg by end of October which I repeatedly questioned (with no response) having previously experience of Pred at a more gradual reduction. Dropping from 30 - 20 I felt very ill and suffered extreme fatigue so I decided to increase by 5 mg for a week and gradually taper thereafter which worked well. I still get tired from time to time but going down to 15mg in January didn't bring back that awful fatigue and feeling quite well I had already started the process of tapering down to 10mg by early March. By contrast yesterday I had a letter from my consultant (who doesn't listen or discuss anything) as a follow up to consultation at end of January saying I should stay on 15mg and go to 12.5 mg in March and 10 in April for 2 months then reduce by 1mg every 2 months. I was hoping I could initially taper a bit quicker than this provided I felt well but have replied I can stick on 12 through March and then follow his plan until told otherwise. I don't know if it's likely I could cause myself damage from the Vasculitis by going down to 10 earlier . His letter also said I was currently suffering fatigue and lethargy which I certainly hadn't said so don't know if he based his proposal on that. I hope things settle down for you soon.
" I don't know if it's likely I could cause myself damage from the Vasculitis by going down to 10 earlier"
See the reply immediately below for my view on that. You can go faster - but you have to be alert for your body telling you to slow down. And his instructions for after 10mg are partly aimed at allowing your body time to catch up and adrenal function to return which it can only do if you allow it enough time. You are balancing 2 things below 10mg - control of the inflammation causing the vasculitis AND the adrenal insufficiency that long term steroid use causes. It usually returns but can take a great deal longer than most people expect - and that includes doctors.
Even with the start of the treatment including the i.v. pulse therapy, to be at 15mg after only 5 months is not a gradual taper and we would say far too fast. Or at least - as I said yesterday, you can reduce the dose as fast as you like BUT you must pay attention to your body and when it starts to suggest you may be approaching your destination you MUST slow down.
You are NEVER reducing relentlessly to zero pred - you are titrating the dose to find the LOWEST EFFECTIVE DOSE, the lowest dose that gives the same symptom relief you had at the starting dose. The underlying cause of the inflammation that causes GCA symptoms isn't affected in any way by the pred, it isn't cured, even with that massive i.v. dose at the start, that provides a massive clear out of all the existing inflammation but the dripping tap of inflammation continues in the background, trying to fill up the bucket again. As long as you are on more pred than you will need to deal with that daily top-up it never builds up - but as soon as it goes under that amount, the inflammation will start to build up again. Your aim is to find the pred that just does that - so the symptoms are minimised but the symptom relief remains optimal.
The rest of what I'd say is the same as DL has said - back to the last dose you were really good at and slow down the next stage.
Thanks as ever. I was expecting a much slower taper after 10mg. Just a bit disappointed I couldn’t hit that in March instead of April as I had it in mind that I would generally feel much better for it - but I’ll do as I’m told and at least I’ve got some helpful guidance from my consultant at last. 😃
You may a good consultant who gives good advice - but they only know from research and others experience, they haven’t lived it… and with the best will in the world, that’s the subtle difference.
Lots of sympathy from another GCA-er. It's all so familiar, particularly being 'away with the faeries'. This site is an absolute godsend, as you are already experiencing. Mostly the advice, of course, but, very important, the realisation that there are other people out there feeling peculiar. And last but just as important, the well-founded optimism conveyed by Dorset Lady in all her messages of advice. Finally, on a frivolous note, do remember that this disease is invaluable in getting you out of things like dinner parties.
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