Tapering steroids and the de elopement of GCA

[Patricia10]

I am aware that 2 out of 10 people suffering from PMR go on to develope GCA. Is this due to speedy reductions in the level of steroids or can this occur anytime.

[Celtic PMRGCAuk volunteer]

Patricia, GCA can develop at any time, either on its own or alongside PMR. If GCA is lurking when PMR is diagnosed, then the usual steroid starting dose for PMR will probably not be sufficient to control the inflammation of GCA. Likewise, if the inflammation of PMR isn't treated and kept closely under control with steroids, there is a greater risk of GCA creeping in through the back door. That is exactly what happened to me after spending a year with undiagnosed therefore untreated PMR.

[Runrig01]

I had undiagnosed PMR for 14 months before starting steroids. I developed GCA symptoms 3 months after starting steroids I'm not sure if it was the uncontrolled inflammation for 14 months or the quick taper. I had 15mgs for 2 weeks, 10mgs for 4 weeks then monthly reduction. I had just reduced to 8mgs when temple pains, jaw cramping and tongue problems started. Just be watchful and see GP or go to a&e if any signs. Try not to worry. Take care and slow with the reductions.

[PMRpro Ambassador]

It's difficult to make sweeping statements - but PMR is one of the presenting symptoms of GCA so it is possible that many patients have GCA that hasn't affected the arteries in the head so only causes PMR-type symptoms. GCA is a large vessel vasculitis and doesn't HAVE to get to the arteries in the head, it can affect just the arteries in the chest and arms causing the typical shoulder problems.

Many doctors think that GCA only manifests as temporal arteritis and use the terms interchangeably - but they aren't. You can have GCA that only ever affects your jaw, scalp and eyes and that is what they call temporal arteritis - or you can have GCA that only affects your aorta and brachial arteries - chest and arm problems. But they can be the same illness. It is just that the temporal artery is easy to get at and do a biopsy so they have seen the giant cells that give it its name. You can't get a chunk of aorta to look at unless you are doing major surgery but these days there are very sophisticated imaging techniques that show if there is inflammation present in a blood vessel. And pathologists doing a post mortem can look at anything and find giant cells were present - and this broadens the knowledge.

[30048 in reply to PMRpro]

thanks for that explanation. My most recent doctor...the " World Renown " one but a man of few words said that GCA and PMR were the same disease.. By the way I stopped the infusions of Actemra after five due to a strange reaction that no-one has explained as yet but convinced me that I did not want anymore . Turned out that there was NO trial as I had been lead to believe. Live an learn

[Patricia10]

Thank you very much for all that information, it is really helpful to understand this illness.

[2watsons]

i WAS OFF Steroids for over two years ,then GCR so looks like can occur anytime ,lost sight in one eye over night ,had very few sytoms just felt having a cold trieded .

Take care

[Patricia10]

That is awful 2watsons. I guess we don't know what is going to happen next with this dreadful disease. Hope you are OK.