general question - what are chances of GCA returning

[Rosina1871]

I’ve had or got GCA. I’ve googled the question of it returning but there seems to be conflicting opinions. Any advice?

[piglette]

You may like to read this article. They think it does happen quite often. ncbi.nlm.nih.gov/pmc/articl...

[DorsetLady PMRGCAuk volunteer]

GCA [like PMR] is a self limiting disease - so as that implies it usually goes into remission of its own accord.

Unfortunately no-one can give you a date for that, so if you happen to come off medication before it has gone into remission it can reoccur…. What the percentage of patients that happens to I don’t know… but don’t think it’s as common as a reoccurrence PMR.

And what do you mean “you had or have got GCA”?

[Rosina1871 in reply to DorsetLady]

I was diagnosed with GCA but down to 3mg so feel it is under control

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Okay,… but being under control, is just that.. you still have it until it goes into remission.

[Rosina1871 in reply to DorsetLady]

👍

[PMRpro Ambassador]

The article piglette has linked is actually a bit confusing - and it is something I have complained about repeatedly in research meetings. We had a very funny meeting last year with Sarah Mackie, Max Yates and Christian Dejaco where we discussed the "multiple Rs" as Max Yates put it which were relapsing, recurring, resistent and recidivism. might have been another, and what exactly was meant by each in the context of PMR and GCA!

Many doctors class relapsing as a return of symptoms after initiation of corticosteroids and starting to taper. We all know (and a few good rheumies admit) that the major reason for that sort of relapse is tapering the pred dose too fast and too far. The pred cured nothing, it did not alter the underlying autimmune disorder that created the inflammation. That continues in its own sweet way, usually abating slowly over time until eventually it dies out altogether. At any given time you need enough pred - try to reduce it too far and the symptoms will reemerge.

I call it a relapse when the patient has got to a low dose of pred or even off pred altogether and been stables for some months and then all of a sudden the inflammation ramps up without any change in anything else and symptoms return, requiring an increase in pred dose to manage the increased inflammation and symptoms. That is the situation you appear to be in at present,

If you were to reduce the dose too much further and the GCA is still there - it would relapse under the definition a lot of doctors use. On the other hand, by my definition, you would get off pred by tapering slowly and get to zero and stay there for about 6 months and be fine. Very low activity disease can result in getting off pred and being fine for 4 or 5 months and then the inflammation has built up far enough for symptoms to appear.

The doctors' version of relapse probably happens a lot. MY version of relapse isn't that common - i,e. the patient gets off pred and is off pred for a year or more but later has another episode. It happens but not very often.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Totally agree - I did consider replying along similar lines, but knew you’d do it much better…..

[Rosina1871 in reply to PMRpro]

Thank you. Very interesting

[prunus in reply to PMRpro]

Your last paragraph sums it up exactly as far as I'm concerned. At the moment I'm on two and a half mgs. I am wondering what to do as I seem to be OK but apprehensive of lowering.

[PMRpro Ambassador in reply to prunus]

Keep tapering VERY slowly. Prof Dasgupta told us in a seminar 3 years ago that he often keeps patients on 2-3mg long term as it reduces the risk of relapses - I think 2-3mg as a blanket level is unnecessarily high (not that it is high) and many could get to 1mg - and even off altogether. But you need to stay at each lower dose a couple of months and treat zero as a new dose when you get there. And when you DO get to zero, you need to be alert for ANY, even slight, return of symptoms. Then you can go straight to 1mg and head it off at the pass, But for the majority, zero IS possible. Ask DL and jinasc - they've both been there for years

[Rosina1871 in reply to PMRpro]

Thank you for your encouraging comments. I intend to taper 0.25mg every six to 8 weeks using the dsns method . Fingers crossed

[prunus in reply to PMRpro]

Yes, thank you very much for that advice. After three relapses I must take it very slowly like you say.

[Smellydog9]

Webinar in June by a researcher in Bath felt that GCA doesn’t sell limit as PMR does and that we always have it although it may well go into remission. For this reason he has been asking NICE to add statins and aspirin to our pathway to reduce the long term cardiovascular effects. Very interesting although not quite what I wanted to hear 🙁

[PMRpro Ambassador in reply to Smellydog9]

Another with doubtful knowledge about PMR though - there are increasing numbers where the PMR DOESN'T self limit and a low dose of pred is required ongoing - probably more than in GCA.

If he were up-to-date he would also know that aspirin is no longer advised as a platelet inhibitor as its positive benefit is FAR outweighed by the increased risk of severe bleeds.