Curious

[Champie]

Just a question out of curiosity. Those of you who have GCA. I see starting therapy anywhere from 40 mg., and up.

Why the differences in starting doses?

[DorsetLady PMRGCAuk volunteer]

This is what the guidelines say -

Uncomplicated GCA (No jaw or tongue claudication or visual symptoms):

Prednisolone 40-60mg daily until resolution of symptoms and laboratory abnormalities

Complicated GCA:

Evolving visual loss or history of amaurosis fugax: i.v. methylprednisolone 500 mg to 1 g daily for 3 days

Established vision loss—at least 60 mg prednisolone daily.

But really it’s based on the medics opinions and the individual’s circumstances.

For example because I’d already lost sight in one eye, and Consultant wasn’t sure the other one was okay I was started on 80mg daily. Stayed at that level until everyone was sure second eye was okay (2 weeks) - then reduced to 60mg daily.

[SnazzyD]

They try to start with the lowest dose possible. Generally if there is no eye involvement they start on 40mg. If someone has lost sight or has worrying eye symptoms they will increase or even deliver it intravenously. My case was in between in that they gave me 60mg because my eyes were shutting down like looking through a reducing tube. However, I had a miraculous resolution of symptoms after 2 hours and the eye doctor decided he couldn’t see anything bad, they dropped me to 40mg after a few days. I then stayed there for 6 weeks.

[Champie in reply to SnazzyD]

Thank you both. I had a feeling it had something to do with visual symptoms.

Just trying to learn everything I can.

This is an awesome forum.

You all seem to be quite knowledgeable on everything concerning PMR, and GCA.

Glad I found this place.

One more thing. How do you feel about the necessity of a temporal artery biopsy?

[SnazzyD in reply to Champie]

This is discussed regularly. You’ll get more technical replies I’m sure but the main issue is the rate of false negatives which range from 5% to 45% depending what you read. This can be due to to the giant cells just not being in that particular piece of artery section or even that artery at all. On top of that, as soon as you start Pred the cells will be affected and the longer you are on Pred the more likely you’ll get a false negative. Opinion varies on how long you can be on Pred and it still be worth doing. I’ve read from 4 days to 6 weeks. The trouble is that few people can get the biopsy done on the same day as diagnosis and to not give them Pred is to risk their sight. It is quite an invasive test with risks as with anything and the skill and experience of the surgeon is important for getting an accurate result. To get a positive result really means it’s positive but a negative could be false so treatment has to be continued just in case it was false. Some people here have refused because it would make no difference to their medical management and some go ahead to try to prove it really is all worth it. Some places provide a specialist type of ultrasound which is just as good without the invasiveness. In the U.K. it is not widely available due to the training needed.

[Blurry62 in reply to Champie]

My insurance required a temporal biopsy for coverage. Period.

[Chia123 in reply to Champie]

I had a biopsy 7 weeks and 5 days after starting on 40 mg of preds. Wasn’t going to have it because I thought it would be a waste of time. In the end, I changed my mind and went ahead. It was positive and the procedure painless. It’s impossible to see where the incision was.

[pugrescue in reply to Champie]

Ask your dr if the biopsy result is negative, will they still dx and treat on symptoms and blood tests? If they say yes, then no sense having it IMO. I did have the biopsy and it was no huge deal, but I would not do it again.

[PMRpro Ambassador]

You need what you need - the amount different people need varies just because of the amount of the oral dose you absorb. Then there is the activity of the underlying disease process - more active needs more pred. It also depends a bit which part of the body is affected. If the vasculitis is affecting the occipital area, the back of the brain, then the blood flow to the optic nerve is at risk. Anyone with visual symptoms or jaw claudication will be started on a higher dose to reduce the inflammation as quickly as possible to reduce the risk of loss of sight.

TAB - will it change the way they treat you? A positive result is 100% certain it is GCA. A negative biopsy is fairly meaningless - it doesn;t mean it isn't GCA, it means they didn't find what they were looking for. Which isn't the same.

[Champie in reply to PMRpro]

Thank you PMRpro.

So when concerning TAB therapy should be instituted based on symptoms vs biopsy results. As you can have it even if you have a negative outcome.

[PMRpro Ambassador in reply to Champie]

Exactly

[Blurry62]

I was started at 60 but had to reduce it quickly to 55 and then 50 because I wasn't tolerating it. Ended up in the ER twice within 10 days. I think here in the US it's about "tolerance" to the dosage of prednisone.