I have been put on steroids 5 days ago for suspected gca 60mg and had a biopsy awaiting results, I really did not know there was a issue until I went to hospital on a unrelated issue, I had a scan and symptoms I had ignored as they were intermittent jaw ache/ tunnel vision/ scalp irritation/pains in the arms.
I was wondering how long the steroids take to kick in as I ate a apple today and my jaw ached also vision became a bit blurred when walking the dog, am I over thinking things? I also feel so on edge with these steroids .
Thanks in advance
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Bauldy
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There are others far more familiar than I am with the time pred takes to work in GCA - but I do know that it can be a week or more for some people. Some people also require more than 60mg so if you are very concerned speak to your doctor.
You may be overdoing it a bit - you have a serious systemic illness and are taking a high dose of a very powerful drug - rest and pacing need to be the order of the day.
Hello and welcome. It depends on what dose you need; 60mg may not be enough and some need 80mg for example. My GCA symptoms went in 2 hours after my first dose but were in the background in the early weeks if I did too much and when I had absorption problems (another story). Pred can affect the vision by making it harder to focus properly and I found the problem was mainly when trying to change from one depth of field to another and movement. Has it improved at all?You really need to treat this as a serious illness being treated with hefty medication, I’m afraid. It’s not a case of taking the Pred and carrying on as normal. Feeling wired yet tired with racing brain and anxiety is par for the course, but it does get better as the dose reduces. Insomnia is common and naps often become the order of the day.
Just a note, if your biopsy is negative they may still treat it as GCA because of the significant rate of false negatives and they can’t just stop the Pred and risk your sight. This happened to me.
Do you have an easy contact with your doc who is overseeing this?
Everyone’s different in response times. I took 50mg pred and within 6 hours felt like a new person. I had a negative biopsy. I also had a positive ultra sound for GCA. Sadly though US isn’t always readily available.
Some of your symptoms sound very typical of GCA and you may need a higher dose of pred. Don’t be afraid to seek further advice. Do you have a Rheumatologist or is it your GP treating you? Whichever I would go back to them re your symptoms without question. Best wishes.
Thanks for the quick replies, the reason they started me on steroids was the symptoms and swelling of the artery, I have been buzzing and thought once on steroids it was a quick Fix and life went on. So glad I joined this forum it’s good to be in contact with people with similar symptoms.
I will have many more questions but the advice already has helped Thanks
I fear not - it will be a long haul to start with at least. With time you will get a handle on it and as the dose goes down things do improve - but you have to do your part too and initially at least behave like a poorly person. Trying to bash on as normal just delays recovery.
I was given 60 mg of steroids and it took about 48 hours before I felt the benefit, but my jaw hurt when I chewed anything for weeks. It really worried me but it eventually wore off.
Hi,I too thought pred would instantly get rid of my headache but it took a good week or more, in fact I was first seen at the eye hosp where a specialist insisted it wasn’t GCA because I still had symptoms the next day, only to prove her wrong a couple of weeks later, I also saw a rheumatologist about 6 weeks later and it was confirmed via a ultra scan on the temples and other symptoms.
I’m still not clear of it 1 1/2 years later, I now have PMR.
It’s an ongoing illness that makes it’s own mind up.
I was put on 80mg the moment I was given the diagnosis of GCA. I can't say I feel any better though as the initial symptoms weren't too bad. I'm on 5mg now and it's a struggle.
I’m much the same, I ignored the symptoms believing they were nothing , it was only after seeing the doc on a other issue they related the symptoms to gca, my symptoms were not problematic headaches, jaw ache , aching arms , tunnel vision, tired they would come and go, they spotted swelling in my temple artery.
Sorry to hear that you have GCA. As others have said everyone is different. Some experience the three day wonder others sadly don't. In the early days fatigue is the worst part. You can fight it but it still wins in the end. If you are lucky your symptoms will ease but don't dispair if they take time. People describe it as a journey, and they are right. You'll get there in the end. No quick fix sadly.Just take care.
Hi there, sorry to hear you're unwell. As previously said....we are all different. My main symptoms were an awful headache and sore head, with an increasingly aching jaw, definitely worse in the morning. I took my first dose of pred in an evening and could not believe how different I felt the next morning! Symptoms gone! But....and there's always a but....as others have said, you have to take it easy. Your body needs to adjust to this new condition and the medication, steroids can make you very jumpy in high doses. But you will adjust and it will get better as your dose reduces. You are lucky to have found this group so early. I didn't find it until I was about 18months in, by which time I was very low. Turns out they had been trying to reduce my pred too quickly and I was see sawing between 20 and 30mg. For most of us it is a slow process and that is sometimes hard to accept, but the support on here will help enormously. Just ask your questions 😊 Good luck.
In 2015, I had the GCA symptoms for a while before GCA was 'suggested'. I had a blood test which meant I was put on 50mg prednisolone with a promise I would feel like a new woman.It wasn't true, my husband was disappointed and so was I got quite different reasons!!
6 days later I saw a different doctor in the practice who arranged for me to go to Rheumatology who ran a 'same day' service for suspected GCA.
I had a biopsy 2days later which confirmed the diagnosis. This was before ultrasound was widely used. The problems with biopsies are that the steroids can have had some effect which make the results false negative, secondly they may pick a piece of artery that does not show the symptoms. As someone else has said a negative biopsy doesn't mean you don't have GCA and that you will continue to receive treatment. (Mine was positive).
Now my local Rheumatologist does ultrasound for diagnosis, however even if no 'halo' is found, treatment is still given based on symptoms.
I was feeling better once I went to Rheumatology and was given a 'likely' diagnosis, thankfully not a brain tumour. You get a buzz from high dose steroids but it didn't stop the feeling of being unwell for a while.
I wish you well. I have had some really great advice from members.
Not sure where you live but get a rheumatologist very soon, particularly one that knows about GCA.
The last 2 weeks have been confusing to say the least a choice of going blind or go on steroids seemed a easy choice but the journey doesn’t end there , I have a telephone consultation with my rheumatologist tomorrow and today I had a phone call from a neurologist today saying I have to have a go for another ct scan , I did ask if there was a issue and they replied we need to investigate further! Investigate what ?
No - if it is positive then it is the answer, Positive is 100% certainty it is GCA. Negative means they didn't find what they were looking for and there is a range of reasons that might happen. GCA forms what are called skip lesions - for one thing, they can be irregularly spread through the tissue so there can be patches with no giant cells to be seen. There may be other signs of inflammation - but there may not be. It may not be affecting that bit of artery - the only reason it is used is because it is superficial and can be removed without any problem for the patient, it isn't essential. They mightn't have taken enough - it is even known for a vein to be excised instead of an artery! It needs an experienced surgeon and a good histopathologist. Many a potential slip waiting for the unwary. And it is good they are being careful ...
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