Can GCA come back after 18 months?

[sagegreen]

My GCA was treated with prednisolone for 3 years and I tapered off in May 2021. Over the past few weeks I have had intermittent right sided temporal / side of head tenderness, and headache. That has become persistent over the past 3 days. My excellent GP has sent blood for CRP, but says that I should start 40mg prednisolone today. I am reluctant to start that journey again. Any thoughts or advice would be appreciated. Thank you.

[Devoid]

hi I did over 2 years of steroids , methotrexate and finally tocilizumab for LVV. I came off everything at Christmas and started feeling unwell in June. Had an 8 week course of steroids, reducing to zero and a positive ct pet scan 3 weeks after that . So it’s either back or never went away completely

[sagegreen in reply to Devoid]

Thank you for replying. I don't know what LVV stands for.

[Kendrew in reply to sagegreen]

LVV stands for Large Vessel Vasculitis

[PMRpro Ambassador]

The propensity to develop GCA never goes away although it is very unusual to have a second bout - but it does happen. If it is GCA then you have the same risk of visual problems as the first time - so refusing to take pred does open you up to those risks.

[sagegreen in reply to PMRpro]

Thank you all for your replies. Visual problems are a worry, so I took 40mg yesterday, but CRP today is 2 and ESR is 17. GP has arranged an appointment with Rheumatologist on Monday, but wants me to continue with 40 until then. Could it be less? Right sided tenderness / headache still present so steroids haven't led to immediate change.

[PMRpro Ambassador in reply to sagegreen]

One lady on the forum was in the ED and her vision was shutting down despite normal range blood markers.

40mg is the standard starting dose for non-complicated GCA, i.e. symptoms but no visual symptoms or jaw pain. It often does take a short while before symptoms rectify - it isn't something I would care to risk. Perhaps DorsetLady will comment

[DorsetLady PMRGCAuk volunteer in reply to sagegreen]

I would stay at 40mg until Rheumy appointment, always better to err on the safe side... and 24hrs may not be long enough for that dose to kick in. You will only have been on that dose for just under a week on Monday, so if it's not GCA, then reducing will not be too much of an issue.

I appreciate you don't want to be on a higher dose than necessary, but at the moment you don't know if it is too high a dose, and as you have had GCA previously then you are well aware of the dangers.

[sagegreen in reply to DorsetLady]

Thank you PMR Pro and Dorset Lady. I didn't know you could have active GCA and a normal CRP. There are no certainties with this disease are there? I have just taken another 40 and will stay on it until Monday. I am so grateful for your wise advice.

[DorsetLady PMRGCAuk volunteer in reply to sagegreen]

Some patients don’t have raised markers, which does cause issues with diagnosis - but even if you do, very often the symptoms can precede the inflammation marking rising by a couple of weeks……

Please let us know how you get on, I do have doubts as it’s only one-sided so far, but, as you say, no certainties …

[PMRpro Ambassador in reply to sagegreen]

The downsides of a few weeks of unnecessary pred are far outweighed by the risks of NOT taking it!

[sagegreen in reply to PMRpro]

Thank you both again. Taking 40 daily. Right sided tenderness etc not reduced, but problems with sleeping which doesn't help . Stopped using right ear bud and hearing aid because it makes it much worse, but GP checked my ears. No sight problems.

Four years ago, I definitely had PMR with CRP of 40+, and then rt sided headaches, assessed as GCA, but I sometimes wonder whether it really was GCA or whether many of the symptons were related to steroids and tapering. The scan and biopsy were negative, but they were 2 weeks and 14 weeks respectively after I started steroids. Intermittent right sided headaches continued for the first year or so, but then diminished. However, my doctor noted that I no longer have temporal pulses on the right, which were present when diagnosed with PMR, so perhaps it was.

I would appreciate advice as to how to get the most out of my Monday appointment. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to sagegreen]

Think you need to tell doctor what you’ve told us -write down main points so you have it clear in your mind -and see what their response is…and ask what they are going to do to get a definite diagnosis of what it is.

[PMRpro Ambassador in reply to sagegreen]

And having done what DL suggests - make a careful assessment of that doctor. Are they ready to work with you and include you in any decisions. Or are they going to insist they are right - and infallible!

[sagegreen in reply to PMRpro]

Thank you both. I will start practising!

[sagegreen in reply to PMRpro]

The consultant was very approachable. She noted that the headaches haven't gone yet, and CRP is 2, which is atypical, but noted that 3% GCA patients don't have raised CRPs. Equally, she said there are few other causes of one sided temporal headaches. Unfortunately they don't have the capacity to do a biopsy within the week. I am to take 40mg for another week and then she will phone. If headaches have gone, the assumption is likely to be that it is GCA and carry on with steroids. If headaches persist, probably not GCA and come off steroids. She has asked for a CT head scan. Thank you both once again. Our health service is very impressive when it works well.

[Miacaro45]

Yes, it can come back.

[Raewynne]

Yes Sorry to say .It can come back.Mine did.I was quite upset but at least I knew what I was in for.So important for us to keep the stress levels down if we're able to. Life can be a roller coaster .

[prunus]

Yes my has come back three times since I first had GCA ten years ago. I have never been as high as forty again though. The Dr wanted ten. I am currently on three mg. of predisolone.

[PMRpro Ambassador in reply to prunus]

When you say it has come back - is that after getting off pred altogether or a flare while reducing the dose?