Can PMR without Prednisone lead to GCA?

[kp60]

I understand that taking Prednisone for PMR reduces the inflammation but does not change the trajectory or the PMR process. So is it not the case that the same applies to GCA? PMR without Prednisone doesn't "cause" GCA, but if GCA is present the Prednisone will reduce the inflammation thus reducing the damage caused by GCA. Not sure I have that right. Someone commented that not taking Prednisone if PMR present might lead to GCA. Confused.

[DorsetLady PMRGCAuk volunteer]

GCA and PMR commonly overlap... some have PMR, some have GCA, some have both.

PMR is observed in 40-60% of patients of GCA patients at diagnosis.

Between 16-21% of PMR diagnosed patients may go on to develop GCA throughout their PMR life.

Pred does not change the lifespan of either disease as they are self-limiting.. as you say it only controls the inflammation caused by the underlying illnesses.

The doses taken for PMR are not sufficient to control the inflammation in GCA [minimum starting dose without sight issues is 40mg.. considerably more with sight disturbances].

If you have PMR and aren't taking Pred, your GCA may develop earlier that if you are taking them, but I wouldn't say for sure that happens... also you cannot "assume" even being on Pred is going to stop you getting GCA. As we know that doesn't happen either.

[kp60 in reply to DorsetLady]

thank you!

[Lyndaki]

From personal experience, I was getting all the aches & symptoms of PMR for over 2 months but didn’t see a doctor because I was abroad. During the last week before my return to U.K., I experienced headaches, & jaw claudication. I went to GP immediately when back in U.K. & was diagnosed straight away with both PMR & GCA…& I’m sure I wouldn’t have developed the GCA if I’d seen a doctor earlier as I’d not had any symptoms of it before that final week.

[DorsetLady PMRGCAuk volunteer in reply to Lyndaki]

Not sure you can know that… as said you probably had both anyway… my head ‘issues’ took a lot longer to materialise than the shoulders and general malaise…

[Bluey-1 in reply to DorsetLady]

Me too. I had general malaise a few weeks before the headaches etc

[Gimme]

I've often wondered about this too, as advice in the medical literature seems to be contradictory. Certainly, some doctors seem to think that untreated PMR can lead to GCA, which doesn't make sense to me, when the dose of pred for GCA is so much higher and I have seen it mentioned that the dose normally taken for PMR is unlikely to prevent GCA developing. As DL says, I think it more likely that people who develop GCA had it all along, but it hadn't yet expressed itself. It seems to be one of those controversial points that different authorities disagree on. Though opinions change with time and it is always worth looking at the date of any clinical paper that you are reading. When I was first diagnosed with PMR, the first rheumatologist that I spoke to put the frighteners on me, making me think that I was in imminent danger of losing my eyesight, until I saw an ophthalmologist and she put me right on that one. In fact, so far, the nice lady ophthalmologist has given me more helpful advice and reassurance on my PMR than anyone else I have seen, including the rheumatologists. I've been given so much contradictory information over the last year, that it seems normal in the PMR journey. I just wish that the medical profession would get their story straight, as it has undermined my confidence in them and the care that I am getting. Anyway, that's my moan for the day. I look forward to hearing further comments on this question.

[Bluey-1 in reply to Gimme]

I think so much is still unknown. Also, reading on here it’s clear the trajectory of these conditions for different people varies, perhaps in response to treatment and other illnesses, particularly other AI ones.

[Telian]

Hi kp60

Sight loss through GCA is irreversible.

In my case In 2014, after 6 months of being treat for migraines and me saying they were nothing like the migraines I suffered for 10 years when going through the change, I was fast tracked to Rheumatology because of visual disturbance. Ultra sound showed a ‘typical halo’ and diagnosis was GCA. After 50mg Prednisolone and 6 hours later I felt like a new woman. 4 days later I had a TAB which was negative for GCA. They didn’t get enough of the inflamed piece - which doesn’t mean GCA isn’t present. About 18 months later I was diagnosed with PMR.

In reverse order, my neighbour developed PMR like symptoms and him being really poorly and living alone I suggested he ought to see his GP as if it was PMR and remained untreated it could become GCA with risk of sight loss. He knew I had both. I believe he did see his GP but wasn’t given any treatment. Four months later he suddenly lost sight in each eye and was diagnosed with GCA. He had untreated PMR. He was gradually weaned off Prednisolone and discharged from Rheumatology. He recently had a stroke. Make of that what you will. I often wonder if he should have still been on Prednisolone for the stroke risk but we’ll never know. Each person has a different story to tell but the main theme is get the correct diagnosis and take the Prednisolone.

DL explains it well and to repeat never take the risk with your eyesight.

[Sueloucam in reply to Telian]

What a devastating story, I am very concerned for those patients that do not have someone to ‘battle’ for them. I am aware of an older lady who has PMR and she had to be off the prednisolone within a certain timescale and thus her symptoms returned. I did give advice but she is not family and lives a fair distance away. It breaks my heart.

[Telian in reply to Sueloucam]

There’s more than we know about too. Like you I wasn’t family, his wife died years back and he had called his sons numerous times that week. I didn’t know this until too late. I hate to say this but the delays in them being able to get time off work didn’t help. An opportunity missed his Rheumatologist said. When my neighbour came home I visited him and he cried on my shoulder saying he didn’t understand what I was saying to him those months back. Another thing I want to say is as I ‘looked so well’ it’s not believed you’re really unwell.

[PMRpro Ambassador]

It is said by some experts that unmanaged PMR inflammation is more likely to get to GCA level if not managed early. My PMR wasn't treated for 5 years, it didn't turn into GCA but I'm pretty sure there was some LVV going on - and arteries being damaged,

[kp60 in reply to PMRpro]

Thank you! I'm still a little unclear as to how to diagnose LVV. Someone said a full body PET scan? I have elected not to resume Prednisone even tho I still have mild PMR -like symptoms, and CRP slightly elevated at 14. It has been almost one year since I titrated off of prednisone, after 1 1/2 years. I had an temporal ultrasound that was negative and so based on the water/mop/bucket analogy I was hoping that the same would apply to Prednisone and GCA/LVV. If there is a chance that I would be harming myself however by not taking the Prednisone I will reluctantly start it up again...maybe at 10 mg and see how that goes. Thank you again PMR for generously sharing your knowledge in this forum!

[DorsetLady PMRGCAuk volunteer in reply to kp60]

Have a look at this -

healthunlocked.com/pmrgcauk...

..and IF you have GCA/LVV then you need to be on Pred… and 10 mg won’t be enough, so please get it checked.

[kp60 in reply to DorsetLady]

thank you! I don't believe I have GCA - not sure about LVV as don't know how to diagnose that. I may have misled... I don't WANT to get GCA, and if not taking Prednisone for "maybe" a low level of PMR still lurking around in my body increases my chances of getting GCA that I will take Prednisone. My one and only temporal ultrasound came back negative several months ago. Sorry if I misspoke.

And I am digesting the article to learn more!

[DorsetLady PMRGCAuk volunteer in reply to kp60]

I think LVV may be more difficult to self diagnose - with GCA we know the obvious signs - headaches, sight issues, jaw claudication - in LVV they aren’t there but the following can be the same as GCA -

Systemic symptoms, including fever, weight loss, malaise, fatigue, night sweats, and depression are often present and may represent the only signs of the disease.

So, the answer is really same as always, if you aren’t sure then seek medical advice…