Steroids for the rest of my life?

[LindaKent]

Re. GCA. Has anyone here been told that they will have to remain on a low dose of steroids for the rest of their life because their GCA reoccurred? The rheumatologist said that because it had returned, there was a chance it could reoccur again and to rule out the chance of blindness, it would be best to stay on them. I was diagnosed with GCA in June 2017 and discharged from the rheumatologist in March this year. My GCA returned in July and I was prescribed 30mg of prednisolone. I am now on 20mg and tapering at a drop of 2.5 per fortnight.

[SnazzyD]

Hello. Sorry you’ve had this to deal with. My first reaction is that you were rushed off steroids too quickly and you were off them before your autoimmune condition was done. Just over 18 months is quite fast and though some manage it there is also evidence that there can be subclinical inflammation even when symptom free. Your round 2 at this still looks like you’re going down the same path and I fear the doc is setting you up for another flare and rush up to higher dose which isn’t going to do you any good if it keeps happening. To compare, I’m now on 1mg, 2.5 years after starting on 60mg, with no flare so far. How much is your doc suggesting being on for the rest of your life? A very low dose for minimal long term side effects may well not be enough to hold back a full on GCA flare if your body is going to have one, so why not just do the job more slowly. This is just my opinion but perhaps you need another doc who knows more about GCA and who will put you on a slow taper that reflects your needs not theirs. Sit tight, the experts will be here soon when they wake up. A few questions while you’re waiting. Where are you roughly? A country will do. Were you ever symptom free and did you have any PMR?

[LindaKent in reply to SnazzyD]

Thank you very much for your response. I agree with you regarding slower tapering, but went along with the rheumatologist’s reduction programme at the time. I’m in east Kent, UK. I was symptom free between when I was discharged in March this year and when GCA came back to haunt me around the end of June! I haven’t had PMR.

[DorsetLady PMRGCAuk volunteer in reply to LindaKent]

You may have been symptom free when discharged, but I bet the GCA was still there, but controlled by the very low dose of Pred.

Once you’d been off the Pred for 3 months, the inflammation caused by the underlying illness had chance to build up again.

As SnazzyD says 2 years is very quick for GCA, okay some probably achieve that, but not many, nearer 4-5 years is more realistic. Mine about 5 and half years all told .

I was told at the beginning “2 years minimum on Pred, probably nearer 4 years, maybe for life”. Not far out on the 4 years as I was 18 months undiagnosed before starting.

I would suggest that from 20mg down, you need to go more slowly, you may manage 2.5mg per month down to 15mg, even 10mg if you’re very lucky, but not guaranteed. Below that then 1mg per month, or even 0.5mg as you get really low.

Me: in remission for 3 years.

[PMRpro Ambassador]

Under 2 years is very soon to be off pred even for GCA. Since PMR and GCA are basically the same disease I would expect the figures for times to discontinuation of pred to be similar at the lower end and less than a third of people with PMR are off pred at 2 years. Flares of GCA are very common in the first 18 months to 2 years.

Like Snazzy, I would say you got off pred at a low activity period of your GCA and it is very likely that had you still been on even a relatively low dose of pred at the 2 year date it wouldn't have happened and you would probably eventually have found that you were like the majority of people with GCA I know who took 4 years or so to get off pred.

rcpe.ac.uk/sites/default/fi...

They would have kept you at 10mg for a year - under their approach you would probably still have been at 10mg when you had your flare. And they find this way reduces the incidence of flares - though they do also say they still get 1 in 5 at some point,

I don't think they can know if you need pred for life - and I also agree with Snazzy that you are being set up to fail again by the speed of reduction. GCA is an ongoing condition - he won't manage to treat a flare like that though it is very likely that 10mg will be plenty for now.

OTOH, if he finds keeping patients on a low dose works, at least he won't be banging on about you still being on pred! Not all bad.

[alvertta]

At my last rheumatologist visit in May she told me I would likely be on prednisone for life. Diagnosed October 2018. Started at 60. Currently 21. GCA.

[saunders123]

Diagnosed with GCA Dec.2014 started at 60mg now on 3mg I last saw my rheumy in April

I was told to carry on reducing until I got to 3mg and then stay on that for the rest of my life.

My GP thinks I should carry on reducing, I'm not sure what to do, I have another appointment in November.so will see what they say then

[PMRpro Ambassador in reply to saunders123]

Lots of people DO get off pred - and you don't know if you can if you don't try!

[nannyjc]

Hi Linda. My rheumatologist says I now have to stay on my dose of prednisone (5mg) for ever. My body could not cope with it being removed after 12 years on steroids. I am 77 years old. The steroids caused my bones to crumble and I have breathing difficulties due to a compressed lung. I don’t think it’s the steroids persay but the going from 80mg, decreasing, then repeating this time after time. Be patient please.

[Dream21]

That seems fast to end treatment. I was diagnosed in 2016. I still do an Actemra Shot once a week and now tapering to 1mg Rayos from 2mg. I will alternate 1mg one night 2mg next night for a month. Then finally drop down to 1mg. First time I tried it my body was not ready. I seem to be tolerating it well now.

[Cherrill]

Hi LindaKent Don't use this site much these days as I'm now in remission from PMR and G C A.I had both diagnosed 9 years ago and used pred for7 years in varying doses.A real roller coaster ride!I lAt certain times I was told by rheumatologist that it was steroids for life.Im 71 now. Finally 2 years ago all of my symptoms started to lessen .All bloods CRP and ESR became normal range.The steroids have cost me40 per cent bone loss though that could be age as well.Never lose hope of becoming steroid free .All best wishes for the future