Steroid taper after a GCA flare

[pinks33]

After feeling very unwell for the past couple of days with headaches which suggested a relapse of GCA, I decided to up my pred dose this morning from 10 mg to 12.5 mg. Thankfully the headaches seem to have subsided already though I still feel a bit groggy. I advised my rheumy of the increased dose, and was told I must stay on 12.5 mg for 6 weeks before going down to 11 mg. Is 6 weeks a reasonable time to stay on 12.5 mg before attempting another reduction? From what I had read here on previous posts I had thought that I would be able attempt a reduction after say a week, but perhaps I misunderstood. Your thoughts and experiences would be really helpful.

[PMRpro Ambassador]

Yes, you could in theory but your rheumy obviously thinks that the reason for the flare has been that you were at a lower dose of pred than you really need at present and doesn't want you to hurry back there. The majority of flares are known to be due to reducing too far or too fast.

[pinks33 in reply to PMRpro]

Many thanks for that. I had hoped to have a conversation with the rheumy but only got a message via the secretary about the 6 weeks plan, so no chance to discuss things. My rheumy tends to have tunnel vision about GCA, and I was wondering if 6 weeks was the standard advice for everyone who relapses.

[PMRpro Ambassador in reply to pinks33]

This a reasonably low dose in the context of GCA - and a bit longer to prevent a real flare which would require a return to a much higher dose is far preferable.

[pinks33 in reply to PMRpro]

Understood. Will follow orders. I just hope this increase will be enough to get things back on track. I have felt so well up to now apart from increased fatigue recently. But perhaps that was a warning?

[PMRpro Ambassador in reply to pinks33]

Increases in fatigue are often early signs of flares - always worth keeping an eye out when that happens.

[pinks33 in reply to PMRpro]

I have been feeling so wretchedly tired recently that I did wonder if all was well. It mirrored just how I felt before being diagnosed. I will definitely keep a watchful eye on that in future and report it to my rheumy. I did actually see my rheumy three days ago, and mentioned the fatigue, but got no reaction apart from a sympathetic nod.

[DorsetLady PMRGCAuk volunteer]

Good advice I would say.

[pinks33 in reply to DorsetLady]

Thanks. I feel reassured now about the 6 weeks.

[SnazzyD]

He obviously wants to knock it on the head to avoid higher doses after the horse has bolted. Disappointing nevertheless, but hey ho, it’ll pass.

[pinks33 in reply to SnazzyD]

So grateful to have this forum to put things in perspective, as my rheumy is not in the business of explaining.

[SheffieldJane]

Normally we are galloped off steroids by doctors. I would stay on 12.5 for the 6 weeks as it is GCA.

[survivalist]

My logic on GCA Anti Flare V Steroid accumulated dose.

The extra 2.5mg for 6 weeks is about 100mg extra Pred in total.

If you go too low ie down to 10 or 11mg and you get a real flare you will have to go

up from 12.5 to something like 40mg

In just 4 days on 40 mg you will have taken more than an extra 100mg.

As flares are more common in GCA and the accumulated overall Pred dose is far more important than the daily dose, it does not make any logical sense to risk flares with GCA. In GCA each and every flare accumulates the steroid dose to a much greater extent than maintaining a slower taper.

[pinks33 in reply to survivalist]

Thank you for that useful information. If the head pains persist or get worse - and to be honest I am still getting intermittent flashes, albeit mild and lasting only a few seconds - should I consider upping the dose to say 15 mg? If the 12.5 mg is working, how long should it take to get rid of the pains completely?

[Rimmy in reply to pinks33]

I also have GCA and recently had a flare after several weeks at 12.5 mg. I tried 20 initially- that wasn't enough so spent a week at 25 mg and managed to taper over a few more weeks to 18 mg. I know I will have to sit here for a wee while as like you still having occasional 'flashes' which have always been indicative for me of being on the cusp of an effective dose. The renewed pain in my right temple has finally faded away again though. Despite what doctors or bloods may 'say' WE can best tell if we are not having enough Pred to control the inflammation and I agree it is better not to be too hasty trying to taper back down. This is my 2nd flare after 2 years of GCA and not as dramatic as the one I had a year ago when I had to go back up to 35mg for awhile. It's all really frustrating - and while the cumulative dose is important to consider after all we must in the end surely take what is effective or the whole 'exercise' is really pointless.

Best wishes

Rimmy

[pinks33 in reply to Rimmy]

Thanks so much for sharing your experiences. Could I please ask you some more about your flares?.You talk about degrees of flares, i.e. one more dramatic than the other. Another poster Survivalist referred to a real flare, as opposed to my lesser one. What were the symptoms of the bigger flare and did it come on suddenly or build up over a period? It's a big worry for me not knowing how a flare starts or develops, and how soon to take action. I did have extreme fatigue in the past few weeks but I hadn't had a headache in months. Can stress bring on a flare? Were you able to predict that a flare was imminent? I am wondering if or when I should go up to 15 mg to avoid a major flare- there is still definitely something going on in my head, barely a pain, more like a pressure.

[Rimmy in reply to pinks33]

Both flares were similar except the first time I had to go back up to a higher dose to control the inflammation. My returning symptoms the first time were more extreme - headaches, face pressure and pain around my eyes (this was what I got originally and mistook for sinus problems). Also tiny bright blue 'flashes' in my vision on and off. When I first saw an ophthalmologist he just dismissed these but I have noticed when other GCA symptoms increase so do these (still). Fatigue has definitely preceded both flares - it most certainly becomes more extreme beforehand and abates as the flare simmers down again. I was also diagnosed first with PMR and before both flares I had a return of aches around my neck and shoulders in particular and more night sweats.

Obviously we are all individual and I can't say exactly what you should do but if you have any worsening symptoms - especially head pain/pressure (I know that awful feeling so well) you need to find a dose which controls the inflammation level you currently have. Given the disease lasts 5 years plus (usually) it is not unusual to have one or more flares and have to temporarily increase your dose. I would try a higher dose and see if it works ... as better to avoid something 'worse'.

Best wishes

Rimmy

[Cyclegirl54 in reply to Rimmy]

Hi Rimmy,

This is interesting as I am back to 30 mg (for GCA) and have been for a week after tapering to 27.5. My headaches have abated but I am a bit worried about reducing .

[Rimmy in reply to Cyclegirl54]

As I said above I think much 'better' to be sure the inflammation has been under control for a wee while before rushing the next taper.

R.

[lesley2015 in reply to Rimmy]

Hi Rimmy, (and thanks to pinks33 for thread)

(Diagnosed in 2015 GCA/PMR) I was looking for a comment on this, was down to 2mgs, CRP went up as I was feeling bad, went to 10mg, head pain increased so upped to 15, now worse so upped to 25 and hoping I will have knocked it on the head, my consultant is useless and GP is great, but he is now on holiday - so I will stay at 25 for a week, assuming it holds it at aby, then slowly drop again -seeing GP on the 10th, frustrating but necessary I guess.

Best wishes to you both

[Rimmy in reply to lesley2015]

Hi - yes very frustrating and confusing as it is difficult to know just what level you need to go back up to - to control the symptoms. I can't advise you of course but in my experience if the symptoms persist - or even get worse you are clearly not taking enough. I think you'll know after a few days if the 25mg is clearing the inflammation sufficiently as your symptoms will abate - and obviously if they do not then you may need to return to an even higher dose. By the time you see your GP this will likely be long enough for you to know if this has been enough - and then you'll need to taper back down cautiously - 'again'. My GP is also a 'good' one and has permitted me to respond to flares as I need to though I do check my bloods - which have been at least slightly- if not perfectly- indicative of what's going down.

Best wishes

Rimmy

[lesley2015 in reply to Rimmy]

Thanks Rimmy, yes totally agree - it's not my first flare but after almost 4 years thought I had finished with it, but there we go! It makes it harder to go up when having reached such a low dose but better than the alternative! Also a bit of a wake up call that it is still with us and care should be taken on stress and over doing things ..... which I had been guilty of, like many of us do I guess.

[pinks33 in reply to lesley2015]

I am in a battle with my fheumy not to take matters into my own hands - i.e. respond to flares by adjusting the pred dose until I feel better. I recently upped the dose from 10mg to 20mg by daily 2.5mg increments until I felt better. I was only on 20mg for one day. Rheumy was furious and told me via the secretary to get back down to 12.5mg the next day. My CRP had been rising a little but dropped back down a little on 20mg, from 9 to 7. My GP was more sympathetic, but also concerned about increasing the pred dose unnecessarily. I am more concerned about symptoms than CRP results, but am I right? Would the CRP figure increase dramatically with a flare? And is it better to try to control a flare asap, rather than let it simmer and hope symptoms go away? I am feeling better now, the crushing fatigue has lifted but still niggling headaches. I did reduce back down gradually over a few days to 12.5mg.

[PMRpro Ambassador in reply to pinks33]

CRP may not go up in a flare, or the rise may be delayed. And other things, chest infections in particular, will send the CRP up too. Which is why symptoms should always rule.

[pinks33 in reply to PMRpro]

That's what I was thinking, and I was concerned that my rheumy didn't even contact me to ask about how I was feeling or my symptoms before deciding I shouldn't have increased the pred dose, because the CRP figure whilst high, wasn't in his opinion that high.

[PMRpro Ambassador in reply to pinks33]

High is high - it isn't normal.

[Rimmy in reply to lesley2015]

There is nothing you could have done to anticipate this latest flare - it probably was always going to happen as part of the disease trajectory which is about 5 years plus from what I have read here and elsewhere. Anyway on the bright side that means it is quite possible this will be your last turn on this GCA not-fun 'merry-go-round' and hopefully your very last taper ... !!

[lesley2015 in reply to Rimmy]

Thanks Rimmy ... lets hope so

[Stella3]

When I reduce my prednisone I usually go alternate days. Now I am down to 4mg, so I am about to reduce to 3, so I will go 4 one day and then 3 the next, for a month. I am not sure if you can do this when you are on 12.5 but I am so nervous about reducing that I want to do it as slow as possible.

[pinks33 in reply to Stella3]

I too am not sure about reducing pred. I think your alternate day method may be the way to go at the lower doses. but perhaps it is worth a try in say the week before reducing from 12.5mg to 11mg? I think my flare was a result of stress, or just because the disease ramped up. I was on 10mg for 4 weeks when the flare hit, so it probably wasn't as a result of a pred reduction. So much uncertainty with GCA. Thanks for your input.