Here is the tapering schedule I have been prescribed for the next 8 weeks.
2 weeks 15 mg, 2 weeks 12,5 mg, 2 weeks 11, 2 weeks 10 mg.
So far I have followed the internist's schedule with no major problems apart from a bit of stiffness in shoulders.
What do you think, GCA/LVV experts ?
I am in good shape generally, exercising regularly, eating healthily. Some weight gain , but I'm the only one who seems to notice 🤔 (1.5 kilos).
My immediate response? OMG!!!!!!!!!!
Were they SURE it was GCA? To get to 15mg in 4 months is breakneck speed but I suppose it has worked so far.
Dx after double temporal artery biopsy! I started out in March with 40 mg
So it is certain - reductions at that rate in GCA always make me edgy!!!! Unless you are on Actemra!
No Actrema. What would be the usual taper from 17.5 mg?
We all feel that you need at least 3 weeks at each new dose to be sure it is still enough to manage the inflammation. And each step should be no more than 10% of the current dose. Some people get away with 2.5mg steps down to 10mg but by no means everyone.
Also, GCA is very prone to flaring up in the first 18 months after diagnosis - and the main reason for the flares is reducing too far and/or too fast.
It is a conundrum, too much pred isn't good - but reducing too fast and having to go back up is also not good as it often gets harder and harder to reduce.
It would be great if it works - so I hope it does. But if you have any signs of symptoms returning, stop reducing and make sure you see your doctor.
Thanks for the advice. I'll be wary of any signs of flaring and have a small stock of Pred that will enable me to wait an extra week or two between stages if I feel the need.
Absolutely with Pro on this. 40 was on the lower end to deal with GCA, in the first place, so great that it seems to have worked, but the reduction schedule is very fast indeed given the GCA tendency to flare. I’d spend at least three weeks, pref four, on each reduction - partly bcos theyre rather large drops every time. Or drop by a smaller amount each time. It’s so disheartening to have to go back up for a flare - not to mention dangerous to sight. Good luck - I hope it’s smooth sailing for you- it is for some!
40mg is the NICE recommended initial dose where there are no visual problems.
Would a flare result in a jump in ESR and CRP or not necessarily? I'm being monitored every 2 weeks. I'm thinking the Pred would maybe mask the signs?
Not necessarily - even if ESR and CRP were raised at diagnosis, they can lag a long way behind a flare starting to manifest and in some people on pred they don't rise at all. Once you have achieved the lowest level of either you can get to, keeping an eye on them is useful though - but they cannot say that "it is is still in range so that's fine". Any rising trend, even by a small amount is a sign that something is hatching -a single raised value isn't important, a trend is. The normal range is the range of levels found in a very large population of healthy people and covering 95% of them - not a range that is acceptable in one person. My normal ESR is low single figures - while readings of 16-18 are within "normal range", they are grossly elevated for me.
Totally agree with watching for an upward trend in ESR in particular, even though you have no symptoms and bloods are within normal range. That is what I plan to do this time. You are fortunate in having fortnightly blood tests which will reassure you. And as PMRpro says, be vigilant too for symptoms without an upward trend which could come later.
Would prefer to see reductions monthly -2 weeks is a bit more risky -it can take that long to know current dose is enough. If it’s not, then you may have reduced a couple of times, and not know what dose is high enough. Plus stiffness in shoulders is a bit concerning…
Thx so much for the advice. I'm going to see how I feel after 2 wks at 15 mg. I have managed to stockpile enough Pred to prolong each step of the taper by an extra week or two if necessary.
I've been given the same tapering program as Dochaz (see my response below). But as regards monitoring symptoms, could you help me please with identying a protest headache after a reduction, as opposed to a flare. When would a protest headache likely start and how long would it last. On the day of the last taper I developed a mild headache which persisted on and off until day four, when I returned to the previous dose and the headache went.
Like most symptoms/pain if it comes on immediately following reducing then it’s more likely to be steroid withdrawal - I felt rubbish for about 3 days. If it’s takes about 4 days or longer to come on then it’s more likely to be a flare…...if it comes in immediately then try painkiller and see if that helps. If it’s does then it’s probably not a flare.
I have been wondering about the link between speed of tapering and the likelihood of relapsing. Some people seem to be able to taper quickly and others (like me) who follow the slow and steady protocol keep relapsing. Could it be to do with the intial level of inflammation (CRP and ESR) or the initial severity /type of symptoms? I haven't been able to find any references or studies on this. I am currently on my second round of GCA - had a recurrence in May after 6 months in remission. My rheumy agreed a reduction of 2.5mg every 2 weeks from 20mg to 10mg, and then reduce by 1mg. Like you I'm being vigilant about symptoms, though I'm not totally sure how to distinguish a "protest" headache from a flare. You mention having stiff shoulders, and I should say that a stiff neck was one of my symptoms when the GCA returned.
It's so hard to tell what is withdrawal and what might be a flare when you are (like me) not very experienced. My vague shoulder stiffness doesn't really affect my mobility in any way now, though before diagnosis, I couldn't raise my right arm properly. ESR and CRP are both right down to normal levels and I have fortnightly blood tests prescribed for the next 2 months. I'll see how things go over the next 2 wks.
Sorry to hear you suffered a relapse after 6 months. Didi you stop treatment completely before the relapse?
I'd been on tocilizumab for about a year with the pred. I stopped pred about 9 months before the GCA returned, and stopped TOCZ six months before. Although I was re-diagnosed in May, I'd had persistent mild headaches in February, had blood tests which were borderline normal - ESR 29 and CRP 4 - so I didn't suspect GCA. The headaches in fact disappeared completely in March and April, before re-appearing in May with a bunch of other symptoms - neck/shoulder aches, night sweats, backache and hearing loss in one ear. In retrospect I think the GCA was simmering from back in February, and perhaps never really went away. When I started on 40mg pred in May the symptoms diappeared the same day, except for the ear issue which took 7 weeks to normalise. Like you I am hoping for a quick reduction this time - can't face another three years on pred like last time. I'm feeling well, normal really, and hoping the level of inflammation this time round is less, and will respond better to pred. Frequent blood tests are the key to keeping to the right taper, and you are lucky yours are every two weeks. Good luck with your pred journey!
Possibly had you stayed at a low dose you would never have relapsed - even 1mg can be enough. And it is a good reason for ending the tapering process very slowly - if you stuck at each of those doses for 2 or 3 months you know you are fine at a very low dose. As soon as symptoms appear, you can go back to 5mg or less and maybe never need more.
I don't think so - I had symptoms that were livable with albeit very disabling overall for 5 years before pred. I took 15mg and less than 6 hours later I was well over 70% improved. But reducing has always been a nightmare and after 13 years of pred I'm still struggling. There is nothing to predict anything which makes it all very difficult. And my blood markers never went out of normal range - but were raised for me.
Sorry, when you say I don't think so, what are you referring to?
Sorry "Could it be to do with the intial level of inflammation (CRP and ESR) or the initial severity /type of symptoms"
Never expected my reply to end up that far away - I should know HU and its peccadilloes by now!
DId you mean to say "your taper doesn't sound unusual to me"? I too have been wondering if the success of a quick taper might depend on how soon it was diagnosed. My ESR this time was less than half the level at the first diagnosis in 2018. I was really very ill last time, and as weak as a kitten. This time apart from the worrisome symptoms I felt well in myself, as they say, and continue to feel normal. So fingers crossed. I think we learn to find our own way with the taper, listening to our bodies, rather than following textbook rules. You are obviously an expert on recognising the development of your own disease, and very lucky to have immediate help at hand.
Very interesting that you believe pred causes adrenal suppression, and that a biologic like tocz allows the adrenals to catch up with my cortisol needs. I will raise that with my rheumy when we speak next month.
I think I had PMR signs for a couple of years before my GCA diagnosis. Pain in all the "right" places, but I put it down to the aging process. The reason I finally went to the doctor was a sudden onset of extreme fatigue and breathlessness even just going upstairs. So I think that in my case the GCA was a recent development and was diagnosed fairly fast (thanks to a good internist) so I'm hoping the quick taper will work! Will just have to wait and see what happens...
Do you know your CRP and ESR results on diagnosis? ESR is particularly important in the diagnosis. You seem to have avoided all the usual GCA symptoms, and fingers crossed that will be in your favour for a quick taper.
Just thinking that if you had both PMR and GCA at diagnosis, you might have to reduce more gradually at lower pred doses, which is when PMR pain would kick in. I don't have PMR, so am no expert on this, but posts seem to suggest that a very small reduction can be felt in pain levels.
Good morning, l was diagnosed with GCA two years ago and started at 60 mg of pred. I have three flares during that time when reducing. I think largely caused by stress and less pred. I have always found it tough to reduce the steroids and a slower approach suits me better. I am currently at 10 mg for six weeks while starting methotrexate. I feel ok which is 👍 good. I would say be very careful and aware of how you feel as you reduce. Your reduction plan does does sound hasty and one that l wouldn't have been able to cope with.
I did from 60-20 down 10 every 2 weeks. Then 20-10 down by 2.5 every 2 weeks. Could not get back under 10 from PMR. Lots of ups and downs between 10 and 12 Was also on 15mg of methotrexate. All this from June 21 to March 22. They upped methotrexate to 20mg and pred to 20 down to 10 by 5 every 2 weeks. Followed by 10-5 by 1mg slowed to 6 weeks. Now on 9
DId PMR symptoms appear around 10mg dose, or did you already have them on diagnosis? I assume that with a starting dose of 60mg you also have GCA? I am always wary of PMR making an appearance at the lower doses. The lower doses are definitely the trickiest to move from, in my experience. My first flare in 2019 was at 10mg, and the next at below 5mg. It does seem easier to drop down from higher doses quickly. You've been on a bumpy road with the pred, and let's hope the methtrexate helps you.
Hi, no I had PMR before GCA. PMR from Aug 2018 and GCA from June 21. Had a flare of GCA when I dropped from 30-20. It is hard to juggle the needs of both!!
My understanding is that some people, the lucky ones, will be able to cope with a steep taper but many won't. You will soon find out if you have gone too fast by symptoms returning in which case you can get onto the doc asap. If you need to go up again don't worry because you won't be yo-yoing, it would be an increase followed by a steadier taper.
I was allowed to try the 2 week 2.5 taper but had to stop at 15. Went back to 20, after much discussion with doc, it could have been 17.5 but I was on the forum by then and thought I'd play it safe.
As people have pointed out it is below ten that flares are most likely, so need to do a month per one mg reduction, at least, then.
If only we knew the secret to why some people are lucky with fast tapering. But I suppose that secret is just as elusive as the reason why we get GCA or PMR in the first place. It's likely that the 2 week 2.5mg taper is the initial default position of most docs, and I would agree it's worth a try in the first place. As you say, if symptoms return you will know to taper more slowly going forward.
I think in the UK, its more likely to be a four-week taper? My doc said I could try a two-week one because I pushed her. (Early days, full of optimism and ignorance)
The problem is they know next to nothing about GCA from a scientific point of view and a lot of the older docs go by their experience of patients but how much in depth experience do they really get in the NHS when you see someone once a year if lucky. Also, if there is one rule, it's that everyone is individual.
I believe you can get different levels of GCA from light through moderate to significant, but this is consultant experience; so far as I know not research-based. It would explain why some people can quick taper though. I suppose it means some people's immune systems are more actively dodgy than others. If this could be quantified it would be amazing. My consultant also talks about "flickers" when the GCA is probably on its way out but puts in an appearance every now and then. It's a minefield of confusion for some of us which is why we have to know our bodies as well as we can...
Part of it is because of the actual disease activity and amount of inflammation being created not being particularly high. The the further away you are from the dose that you are aiming for, the easier big drops are at first and it becomes more difficult as you get closer to your end point,
Plus there are a lot of other variables - the dose you need depends on that but also how many/how effective your pred receptors are. And how much of your oral pred dose you absorb - said to be anything from 50% to 90% of the actual dose. It isn't simple - or obvious.
Is there anything we can do to improve the absorption rate?
You can improve the absorption RATE - you absorb it more quickly on an empty stomach, but the amount you absorb? Probably not - it is a biological factor.
I agree with you on that. Everyone is individual, everyone's immune system behaves differently, and the level of GCA on diagnosis can vary from light to significant. It seems to be a matter of suck it and see. On re diagnosis in May, A&E advised 4 weeks on the initial dose of 40mg. Then I followed the fastest NICE guidelines which from 20mg to 10mg is 2,5mg every 2 weeks. IMHO there must be some link between the level of inflammation on diagnosis and perhaps also which arteries are affected, and whether you will be lucky with a fast taper. It's reassuring to hear that "flickers" on lower doses might not necessarily mean that the GCA is returning with a vengeance.
I’m so jealous! Started at 60 over four years ago and now at 16! Like a turtle but maybe I might win the race one of these days✔️
I thought it might be useful to give a reference to NICE's updated tapering schedule for GCA. You'll note that it has in fact increased the rate of taper from what it was 2 years ago. After staying 4 weeks on the initial dose it is now 10mg per day every 2 weeks until you reach 20mg - two years ago they recommended 5mg per day every 2-4 weeks. academic.oup.com/rheumatolo...
I really don't understand this recent desperation to reduce at breakneck speed - I do really know what is behind it. But it does no-one any favours even if they think it does. A slower taper that works and doesn't cause flares will result in lower accumulated pred doses in the end. And fewer upset patients ...
Hopefully they have an empirical basis for these new guidelines!
Quite!
I very much doubt it!
A very interesting and instructive read, though I have to admit that I skimmed through some bits.
I highlighted this :
"A single-centre, open, 2-month RCT compared different tapering regimens in 35 patients with new-onset GCA [94]. The same glucocorticoid dose was used in the first 5 days, but the rate of tapering thereafter differed between treatment groups. No significant difference was found between the groups at 2 months concerning relapse rate"
One group fast tapered, the other slow tapered. Only 35 patients, so far from universal, but instructive nonetheless.
Good to know there is some empirical evidence, albeit limited. Also good to know they revise and re-issue their guidelines periodically on many things, including tapering. It means they haven't forgotten us.
35 patients and 2 months! Really meaningful. And it is rarely at that stage in GCA that there are problems. The starting dose is always much higher than they expect to need purely because they MUST reduce the inflammation rapidly to reduce the risk to vision and then they have had a good clear out as a result, Then it takes time for the inflammation to build up again - generally 2 to 3 months. The next 6 months will be far more informative.
Is your biologic Actemra? Just curious because I started it in March along with 40 mg prednisone and am tapering down prednisone toward 5. Currently at 9 going down by 1 every 2 weeks. No side effects from the Actemra.
My mother was diagnosed on the 6th of April and was on 40mg for 4 weeks then 30mg and then 20 mgs for 4 weeks. now we are reducing by 2.5 until November when she will reduce by 1mg each month. I have to take her for bloods every 2 months (prearranged by her Rheumatologist) to check her markers.
Seems extremely quick reduction especially if, like my mother, your biopsy confirmed the diagnosis.
Are you having regular blood tests?
Thank you. I’ve only been on Actemra 5 months hoping to ultimately go to zero prednisone. Cholesterol, blood pressure, weight gain, all due to the prednisone. Not sure what the longer term outlook is regarding weaning off of Actemra.
Thanks again
I hope you can reduce at that pace but it seems rather fast to me. I have had PMR for 7 years and had 2 flares - I find that the DSNS method of tapering works best for me - I am now tapering from 3 mg to 2 1/2 and will stay at that dose for maybe a month before trying to reduce further. This time around I have had better luck by going slowly. Good luck to you.
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