Moving headaches/GCA diagnosing?

[Greytree]

I have had increasingly stronger (but somewhat mild -not migraines) headaches that move from temple to patches on head, base of skull. Scalp tenderness at times. Fatigue (but have had that with PMR diagnosed in October. Am on 15mg Prednisone and lost 11 pounds in six weeks unintentionally. I was already thin. Told rheum doc that’s Mayo Clinic says symptoms could be sign of GCA. Doc says she doesn’t think I have it but will take blood today and check inflammation markers. Is that the way to best check? All that’s needed now? Thanks for any help.

[SheffieldJane]

The trouble is, the Pred you are on will mask new inflammation levels so it is not a reliable indicator of GCA. My GCA/LVV was diagnosed by a specialist ultrasound scan that examined my temple arteries, neck and armpits. The tell tale signs of large vessel Vasculitis were found in my left armpit. My symptoms at that time were not even as concerning as yours. In your position I would be seeking urgent and more definitive investigations.

[Greytree in reply to SheffieldJane]

Thanks. Sounds like I will have to find a way around the rheum doc. But I can mention that the Pred could be masking the new inflammation levels and see her response if test shows nothing of concern.

[PMRpro Ambassador]

Were they raised for PMR? Up to 1 in 5 patients don't have raised ESR and CRP even in GCA and as SJ says, being on pred already could interfere as well. She does need to take a full and detailed clinical history.

[Greytree in reply to PMRpro]

The test on the C-Reactive Protein was <1.0 mg/L (Normal: 0.0 - 5.0 m g/L) Doc hasn't commented on the results but here is the history: June 21 before diagnosis 0.7mg/L -- Oct. 4, 12.5mg/L -- Oct. 5 diagnosed with PMR and put on 15mg Prednisone -- Nov. 15, 0.4mg/L -- Nov. 16, Reduced to 10mg Pred -- Nov. 23 Moderna Booster -- Dec. 8, <1.0 -- Dec. 23, <1.0mg/L -- Dec. 28, dose back to 15mg Pred after feeling bad for awhile -- Jan. 28, <1.0 I don't know if any of this is indicative of anything in particular! I assume she will say I'm fine because this has been the reading for awhile.

[PMRpro Ambassador in reply to Greytree]

There are other causes of raised CRP of course. Were your symptoms typically PMR? And when you say "feeling bad for a while" - what do you mean?

However - dropping directly from 15 to 10mg is NOT a good move. It might work in other uses of pred, it rarely leads to success in PMR!

[Greytree in reply to PMRpro]

PMRpro, I suggested earlier that next reduction it be to 12.5 and then lower. She agreed (Is 12.5 the right amount to you?) Feeling bad = sore calves and tired thighs, pain twinges in neck/shoulder, overly fatigued, occasional scalp tenderness/prickliness, slight headaches that then became more frequent and larger (moving around top and left front and also with tenderness at base of skull in back. raised blood pressure, anxiety, hot flashes and flushing some nights, sleeplessness, need to urinate even when didn't have much urine to release....... See more in reply below to Sharitone. Thanks.

[PMRpro Ambassador in reply to Greytree]

What you describe as "feeling bad" includes a range of symptoms that should be taken as possibly suggestive of GCA or maybe LVV (large vessel vasculitis) - and they require a higher dose than 15mg!!! How do you feel at present and on what dose? Symptoms should ALWAYS trump lab results.

[Greytree in reply to PMRpro]

I am on 15 mg and have all those symptoms. I also have the complication of stopped up sinuses, which could account for some. Everything comes and goes. Trying to track, but it all seems so elusive. It seems like the long-term Omeprazole I take each morning and the Prednisone could cause some of my issues (anxiety? raised blood pressure?)

[PMRpro Ambassador in reply to Greytree]

They could - though omeprazole usually causes GI problems. Pred will contribute to anxiety - but so will your symptoms. Like DL, I suspect a second opinion is called for.

[Greytree in reply to PMRpro]

Could you and others suggest questions that I should ask my rheumatologist when I have the telehealth encounter with her this Thursday? I wish someone could be there with me to help! But second best is know what I should ask.

[PMRpro Ambassador in reply to Greytree]

I think there is a recent post asking a similar question - but I can't find it. You really would be best to start a new thread as few will see it here because of the way HU works. Give an outline - what country, have you seen her in person before, what are her views inasfar as you know them. And what do YOU see as your problems that you want answers for - making a bullet point list of those is a good start.

[Greytree in reply to PMRpro]

Thanks. Will do.

[Sharitone]

I hope that by now you have been given the all clear! I just thought I should say that your scenario does sound rather like mine when GCA was cooking up. Fingers crossed!

[Greytree in reply to Sharitone]

Thanks, Sharitone. My rheumatologist who I have seen once since her diagnosis in October (and who believes mainly what is in markers) declared beforehand she didn't think it was GCA. I haven't heard from her since these numbers came out, so I assume she won't entertain the idea of GCA. Have Telehealth meeting with her Thursday. Don't know how long I'm allotted and my wifi service isn't great so I'm stressed just thinking about it (this time last year nothing stressed me online or otherwise.). But otherwise, my fingers are crossed and I remain hopeful and am ready to get second opinion as needed. Have a good doc who is accessible to be backup!

[DorsetLady PMRGCAuk volunteer in reply to Greytree]

Think 2nd opinion is required…and I wouldn’t be decreasing any amount for the time being.

[Greytree in reply to DorsetLady]

I hesitate to get the second opinion before I talk to the rheumatologist. That said, I'm not sure I can wait. Will give it through today to see how it goes. Tried a Tylenol yesterday but didn't seem to make much difference in anything.

[DorsetLady PMRGCAuk volunteer in reply to Greytree]

Don’t imagineTylenol would help, especially if GCA.Agree you need to see Rheumy first, but depending on the outcome of that then take it from there. And seek another opinion if you aren’t happy.

[Greytree in reply to DorsetLady]

Not considering decreasing now, just wanted to know if, when it's time to reduce, 15 to 12.5 is the appropriate amount. Thanks,

[DorsetLady PMRGCAuk volunteer in reply to Greytree]

It’s what most tapering plans say, but not achievable everybody - you may need 1mg tablets (not sure lowest available in US) or halve the 2.5mg provided plain uncoated type.

[Greytree in reply to DorsetLady]

My 10 mg tablets are halved to combine with a 10mg to make 15mg. They don't always come out evenly. I have to wonder just how much I'm taking with I halve them. Hope I can get 2.5 - when it's time to reduce. Will find out.

[DorsetLady PMRGCAuk volunteer in reply to Greytree]

Just had a look at FDA site -

Prednisone Tablets are available in 5 strengths:

1 mg, 2.5 mg, 5 mg, 10 mg and 20 mg.

So you shouldn’t have a problem…

..in fact if you are having an issue now request smaller ones.

We usually say if you are cutting 1mg ones to get 0,5mg and they are not exact it doesn’t matter if one day is marginally different to next. But at higher doses the difference may be more significant.

[Greytree in reply to DorsetLady]

Excellent! Thanks for checking!

[PMRpro Ambassador in reply to Greytree]

I don't think the slight variation between two halves of a cut tablet makes that much difference and it balances out over two days, What matters is it that it about that much less.

[Greytree in reply to PMRpro]

Aha! Thanks.

[Greytree in reply to PMRpro]

Found this post with questions for ones doctor that might be helpful to others. healthunlocked.com/pmrgcauk...

[Nextoneplease]

Hi Greytree 😊

As others have said on here, if your rheumatologist doesn’t take your symptoms seriously, then I would definitely seek a second opinion (not sure how easy that would be to organise?) Hopefully it isn’t GCA but I do think you need some further investigation and hopefully reassurance xx

[Greytree in reply to Nextoneplease]

I don't anticipate having a problem getting a second opinion. Have a friend in mind.