Diagnosed yesterday with GSA

[Doublef]

Started with severe temple headaches on Sunday, lost eyesight for a couple of minutes. Doctor sent me to accident and emergency , diagnosed with GSA and put on 60mg steroids scans confirmed plus blockage of caratoid artery. Is going to be treated with medication not surgery due to my heart condition.Any advice taking steroids for over 10 months

FF

[PMRpro Ambassador]

Hi and welcome! You will find plenty of support here. Just ask!

However - "Any advice taking steroids for over 10 months"

Were you told that you will take this high dose of pred and then taper over 10 months to zero and that is it? I do hope not because after about 12 years on the forums and thousands of patients, quite a few with GCA, I'm sorry to have to tell you that I fear I have not yet met anyone who was able to stop pred in under a year.

GCA is a chronic condition that requires management with corticosteroids over a long period - it isn't something where you start with a high dose to reduce the inflammation and it is cured, You have a very high dose to reduce the inflammation quickly to reduce the risk of permanent and irreversible loss of vision and then you taper the dose slowly to find the lowest dose that is enough to manage the ongoing inflammation and prevent a relapse. More than a couple of years is common, 4 to 5 seems about par for the course,

At present I imagine you are wired to the hilt - don't worry, it is the pred. It will improve as the dose gets lower but sleep may be a bit elusive for a while. Just try to rest when you can and hold on to the fact it is saving your eyesight.

DorsetLady will be along with her welcome posts which will explain a lot and we have a FAQs link where you will find loads of info.

For the moment, as a start I would say cut the carbohydrate you eat, especially processed foods - that will help to some extent with the inflammation (sugar is very pro-inflammatory) and will help avoid weight gain and developing pred-induced diabetes.

[Doublef in reply to PMRpro]

10 months wishful thinking I think, but yes my first med chart is tapered to 10 months,

[DorsetLady PMRGCAuk volunteer in reply to Doublef]

yes my first med chart is tapered to 10 months,….

Think many of us have received something along those lines, but

a. your GCA cannot read it, and

b. life has a very nasty habit of throwing a spanner in the works….

Something many of us know only too well.

My tapering went well, and I never flared, but it still took me over 4 years to get from 80mg to zero. Due to sight loss pre diagnosis, I was on high doses for longer than usual for the first 3 months, but 4 years is certainly not unusual.

[Doublef in reply to DorsetLady]

I will take advice on board.

[SnazzyD]

Well done your GP! Welcome to another part of Health Unlocked! Steroid treatment for GCA for well over 10 months is very much par for the course and standard so don’t worry.DorsetLady normally posts a newcomer’s whistle stop tour of GCA/PMR and I’ve scavenged it from one of her posts in case she’s busy at the moment.

healthunlocked.com/pmrgcauk...

See what questions arise after that.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Thks -doing a bit of gardening…

[Doublef in reply to SnazzyD]

Thank you

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

As mentioned in dispatches see   SnazzyD has kindly linked my intro post - hopefully not too daunting for you.

As also stated, GCA last a lot longer than 10 months - and the 60mg should protect eyes, but as I’m sure you’ve been advised any issues then please contact GP or if over weekend then NHS 111 or A&E again.

Good luck- and there’s always someone about when you have more questions -and you will 🌸

Yes, well done your doctor - on the ball.

[Doublef in reply to DorsetLady]

Thank you

[Pippah45]

Well you have got the basics - welcome to the forum. I found it quite helpful to know that things wouldn't get better tomorrow and am still soldiering on 4 years down the line. That 60 of pred really knocked the stuffing out of me but my brother was on 100 intravenously when it struck him a year or so before me. This forum rescued me when the Rheumy tried to lower the dose too quickly which seems to be all too common these days. I wasn't keen on having to take steroids but my eyesight is very precious to me. Good luck with your journey.

[Doublef in reply to Pippah45]

Thank you my left eye is not good anyway and rely very much on my right eye, so very frightening when it closed down.