My brother has had PMR for 5 years but has been off pred for most of this year. He has had a headache for days now, which I didn't know about until this morning! He has had a blood test which showed ESR of 70 higher than it has ever been.
He was sent to A&E and given 50mg pred. This frightened him, he had no knowledge of GCA, so he came to me.
He has no trouble with his eyes.
He is a big bloke and I wonder if 50 is enough, I seem to remember the lady who lost her sight was on a similar ammount.
Any advice or comments would be gratefully received.
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scats
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I agree, it may turn out not to be enough. It all depends on how well his symptoms are being controlled. He should be under a Rheumatologist as soon as possible. The GP (good I hope) should give advice about the possible need to increase his dose over the holiday period. Glad he’s got you and your fount of knowledge - get him on here. It’s a scary time.
Thanks jane. He's seeing rheumy on monday .I shall tell him any trouble with vision to go straight to A&E. The GP did send him straight to hospital so they seem to be on the case.
He actually rang and said "what do you know about arthritis of the temple?"
If they are sure it is GCA that is low , they may have given him a middle dose until they were sure , but it's not really the best plan if he has GCA which can have a start dose of 60-80mg.
If he is waiting until Monday , it may be better for him to contact the Doctor necessary an query the dose , you do not always feel vision issues coming on.
If it turns out to be PMR again in the Rheumy opinion he can still drop the dose quicker because he will not have been on it long.
He can also go to A and E , but I think getting it right if possible is better than having a possible emergency.
So sorry Scats , Are we talking about the same person whom nearly chopped off his fingers this Summer?
I've given similar advice but added that as he can't feel things he needs to be able to see them. He has the same black humour. as me! He's having a bad year!
Trouble is, eye checks don't show that much unless the optic nerve is already lacking blood flow. But a retinal exam is always a good idea - even a good optician will err on the side of caution.
Most experts agree that 40mg is enough for most cases without visual symptoms - the very high doses are to reduce the inflammation as quickly as possible to reduce the risk of sight loss. If the headache recedes on 50mg it is probably OK but make him aware that if it doesn't go away quickly he should ask about taking more.
No he had it first! We both blame our dad who actually had it first.
I wouldn't be surprised if he " toughed it out" to some extent and could have needed more pred for the PMR and inflamation built up again. At least the doctors knew what it was this time!
Just a further thought to consider, is his scalp sensitive to touch? One for you /him to decide and review with GP, or Rheumatologist. My dad lost sight in one eye due to gca/temporal arteritis not being diagnosed quickly. He had pronounced veins in temples, mild facial swelling, and bad headaches with a sensitive scalp.
How fortunate that he has you for a sister, Scats! Regarding the dose, at the PMRGCAuk Members' Day in London in September, Dr Mukhtyar from Norwich gave a presentation in which he said the dose they use is based on lean body mass, so it does vary with the patient's build.
A summary of Dr Mukhtyar's talk is in the Winter issue of the charity's NewsWire newsletter. You can find it online at pmrgca.org.uk.
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