Is it a Headache or GCA?

[shazstep]

Hi everybody. I am currently on 12.5. The last time I was here I was getting a lot of pain in the temple region. I saw my opthamologist and he increased dosage to 25mg. That was back in June. Presently I am again getting bouts of severe pain near the temple region. My ers is slowly increasing currently at 25. Is there any way of telling if it is headache or gca returning? I certainly don't want to increase dosage if not necessary. At what pint would it be necessary?

[SheffieldJane]

I would be quite concerned that your dose is insufficient to control the inflammation at present. You have had an unusual journey with steroids, starting on 75 mgs and reducing rapidly to 5 mgs and a complete cessation in favour of Actemra which you subsequently stopped and resumed Pred. If I have got my facts straight you were only diagnosed in August 2017. Do you not think a good Rheumatologist would add value with managing this potentially devastating disease?

I would increase my dose with the severe temple pain. You have already experienced temporary sight loss and your inflammation levels are rising.

You need sound medical guidance in my view. All the best!

[DorsetLady PMRGCAuk volunteer]

Agree with Jane, you have obviously gone below your optimum level of Pred - again.

You need to get medical advice, but in the interim I think it would be wise to increase your dose by at least 5mg.

[PMRpro Ambassador]

If your ESR is increasing it is far more likely to be inflammation than "just" a headache. The ophthalmologist put you on 25mg for a good reason - and you have reduced that dose VERY quickly so it wouldn't be surprising if it were a flare.

The pred cures nothing - it manages the inflammation for the duration. At barely a year after starting at 75mg most people might be at about 15-20mg, especially when they have flared in the meantime. I understand the desperation to get off pred - but not when it looks suspiciously as if the inflammation is still there.

[shazstep]

Thank you for your guidance. It is my rheumi that wanted me to reduce quickly. He wanted me down to 10mg by the time I see him mid October. This I believe is unrealistic. He said I can reduce however I wish as long as I reach 10mg. I think I will go back up to 15mg for a while and see how I go.

Again more satisfaction is gained from this forum than any doctor.

[PMRpro Ambassador in reply to shazstep]

Silly man - I'm sure he does want you to get to 10mg quickly - they all do. However, PMR doesn't play by his rules and you need what you need to manage the inflammation. If you don't - back comes the PMR or GCA and since the ultimate side effect of GCA far outstrips any of pred there is no alternative.

If he complains, refer him to your opthalmologist who is far more sensible and realistic.

[piglette in reply to shazstep]

I had a rheumie like that, he insisted I got to 10mg saying you can expect the odd flare. I was in agony and he kept saying you must reduce, you must reduce. Rather than reducing the pred I packed in the rheumie.

[Rimmy]

The instruction - 'as long as I reach 10mg' !!! would have me worried - there simply CAN'T be these kinds of 'ultimatums' with GCA - it's really all about what symptoms ('messages') your body is giving you not some abstract ideal to get you off Pred asap despite what ever else is happening. We ALL want to be well and not have to take corticosteroids at all but the reason we take them is that the alternatives can be much worse - that IS being 'realistic'.

Best wishes

Rimmy

[Hidden in reply to Rimmy]

Totally agree Rimmy. Crackers they are!