Back on 30mg pred after 2.5 years without

[robinham]

Before I had PMR I had exertional headaches. While on pred for PMR never had them. Stopped Pred 2.5 years ago and headaches came back a bit. For a while I had Naproxene when walking hard which helped. In the last month headaches much worse with temporal and jaw pain so suspected GCA. Worked up to 40mg to control headaches. Now down to 30mg. Still get nasty headaches when exercising but it goes away once I calm down. Pred not making me feel very good though. I never went above 20mg with PMR. Docs don’t think it is GCA but something very steroid sensitve but have no idea what is going on. Anybody out there ever seen anything like this?

[HeronNS]

Consider whether anything else could be causing your headaches. I discovered by accident that low sodium was causing me to get more headaches. It could be something obscure like that in your case but the list of possibilities is endless.

[SheffieldJane]

The obvious thing to say is that Prednisalone only controls the inflammation. You are still significantly ill and need to look after yourself accordingly. The exercise is obviously too strenuous for your present state of health. Your symptoms do sound very like GCA which follows PMR in about 20% of cases or the other way round. I expect the doctor doubts the GCA diagnosis because your bloods are not showing the inflammation. A significant number of patients never show abnormal bloods. Symptoms rule. Please pace your activities.

[robinham in reply to SheffieldJane]

Thanks Jane, yes there are no raised bloods. It’s been going on for more than 10 years and suddenly getting much worse. Something is definitely changing. Quite worried it is something serious like a undetected tumour.

[SheffieldJane in reply to robinham]

It is a worry. Have they suggested an MRI scan? My family are in Australia and everything is tested there, much more than here.

[robinham in reply to SheffieldJane]

Yes I've had many MRIs over the years. Another one is booked for 2 weeks time. This is for the head only.

[SheffieldJane in reply to robinham]

I hope that everything turns out fine and there is an innocent and treatable explanation for your worsening heads. My best wishes to you, let us know.

[Hidden]

I am fairly new to the PMR/GCA journey, so I will let others address your specific questions; I just wanted to say sorry that you have to go though this. What a bummer after two and a half years...🙁