I was diagnosed with temporal arteritis in April 2021 after experiencing temporal headaches, visual disturbances and jaw claudication for quite a while but self medicating and thinking it was just stress/tension. After an awful weekend and googling symptoms I made an appointment to see GP and was diagnosed and started on 60 mg prednisolone with 24 hours! Initially I was put on a 7 day pathway for treatment, seeing a rheumatologist, ophthalmologist, having scans and blood tests but then left to get on with it. I have reduced prednisolone from 60mg to 30mg and still feeling so weird.
If anyone can recommend anything that could be helpful (or unhelpful) I’d be pleased to hear. Also I’m more that happy to offer support to others.
It is reassuring to know that other people are out there.
I live in Buckinghamshire in UK.
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Avon14
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What do you mean by weird? You are still on a steroid dose high enough to make you feel pretty odd. On top of that you are in the early stages of a significant systemic disease. You definitely need a lot of rest and to avoid stress. You need a low carb diet and to really pace your activities. Use one of the tapering programmes outlined on here.It’s also a time to take stock. I don’t think we get sick for nothing, out of the blue. It’s odd to ignore horrible symptoms and try to power on through. I have had time to do a lot of reflecting and to spot some of the culprits in my life. I recommend it. Some of us have found that the job has to go. Welcome to the site, you’ll find a lot of information and support here.
Thank you for your prompt response, it is good to know that there are others out there further along in their journey. I think my weirdness is down to the meds, I feel a heightened sensory awareness particularly with any motion. It’s sort of spacey but not dizzy which makes it hard to do anything physical. I’m trying to manage my stress levels and working less hours.
I will try to lower my intake of carbs if you think this might help. I have lost over a stone in weight and recognise that I need my weight to increase which I thought it would on prednisolone.
Thank you for you welcome and support.
I’m glad that you have had some time to reflect and make changes to look after yourself.
Hello, I had my diagnosis after a whirlwind weekend too but back in 2017 aged 54. High dose does make one feel totally peculiar and it helped me to keep telling myself it wasn’t me but the drug. 30mg is not an insignificant dose so don’t be surprised. It does get better as the dose reduces but is par for the course. When we are given medicine we expect to feel better but in the case of Pred and GCA it can feel the opposite. One day at a time, very low carb diet (lots on why in FAQ’s), low salt, total rest and play the long game; you are very early days. We’re here for any questions or a good place to have a moan. It does get better.
Pred can really give you the munchies and then you can get on to a blood sugar roller coaster. Diet on Pred usually means more than eating healthily in order to keep blood sugar and weight stable. I had to cut out all potato, pasta, rice, maize, flours, sugar, bread etc.
Me - diagnosed 2012 after already losing sight in one eye, in remission since Sept 2016…..proof positive that you do get through it, and get your life back!
As requested, please explain what you mean by weird…..and reducing from high doses with GCA is easy at the beginning, as you get lower it’s more difficult. Took me as long to get from 10mg to zero, as it did from 80 to 10mg.
Thank you for your response. My weirdness, I’m sure is down to the meds, it’s hard to explain but I have a sensory overload, everything feels stronger, louder, brighter, heavier, harder. I feel spacey not dizzy, I get lots of visual disruption. Also the insomnia that I’ve had for 2 months probably doesn’t help although since on 30mg prednisolone I’m now sleeping better. I’ll take a look at the links, thanks.
I’m pleased that you have managed to get your life back although I’m sure it must have been such a difficult time for you.
Definitely medication related…. If you consider your normal daily cortisol level is roughly equivalent to 7.5mg,and your body has suddenly been bombarded with many times then no wonder you feel weird, and hyper.
The eye issues can also be Pred related. But they all reduce as you get lower on the meds.
Mostly been said/asked - but I will say do seriously consider asking to be signed off sick for a while. GCA is a serious systemic illness - and even 30mg is a serious dosage of pred and likely to make working hard. It will affect decision making and relationships with colleagues. You need to rest and give your body a chance to heal. Whatever your job, no-one will ever erect a memorial saying she gave her all!
Thanks. I’m self employed so can reduce my workload but I do enjoy my work and as it is all remote working I would like to continue as long as I’m able but absolutely if it becomes too much I will take a substantial break.
I'm a year into GCA. started on 60mg steroids, now on 5 mg and coping fairly well. Had jaw ache this morning but that's gone away. Slept a lot all year and when I wake up in the morning I feel like a junkie in need of my drug, which in my case is the steroids. After I've taken them I can usually get through the day with a few naps along the way. The steroids make me moody and irritable, but I think that's a fairly typical side-efect.
Hi Avon 14. My first thought was oh she looks great then I thought oh shit up janet that’s what everyone says toPeople with hidden illnesses. I have pmr and I know people with Giant Cell. I don’t really have advice but just thought I’d say hi
I understand completely what you are saying having experienced all the same symptoms when diagnosed with GCA and being on a high steroid dose. I was left in the dark by the hospital regarding potential side effects & the first few months were utterly miserable as I didn’t understand what was going on. All I knew was I just couldn’t function normally, exhausted and spaced out. Eventually my doctor (who had only come across GCA once before) sent me to a wonderful Rheumatologist (I’m afraid privately as struggled to see one on the NHS quickly), who explained everything especially the tapering of the steroids. Also for the first year had monthly blood tests to monitor the inflammation markers.The next breakthrough was finding Healthunlocked, I have learnt more from here than almost any medic, & Dorset Lady’s Tapering schedule is superb.
Thank you. Interestingly after 2 months I received a letter from my rheumatologist which said about a helpline if I had any concerns, sadly no number and the first I’d heard of it! I have contacted my GP when I’ve felt dreadful. I’ll call the secretary on Monday to request the number. I’ve only had 2 blood tests, next one is in July. So glad I found this site.
Welcome to this amazingly helpful group Avon14. I joined about 3 months ago soon after diagnosis and I have learned so much here which has really helped me come to terms with PMR and given me confidence to manage my own tapering routine. Fortunately I have a very sympathetic and supportive GP. I live in South Buckinghamshire BTW, my GP is in Prestwood.
Hi, I too have GCA, when I was first diagnosed it totally shook me up, I didn’t expect it, I’d had symptoms for some time but ignored it, thinking I was just run down, I did tell my doctor about the headaches but nothing was done about it, I also noticed I had blurred vision in one eye but put that down to age, I was 65 in 2019, so assumed it was normal, I also lost a lot of weight, it wasn’t until I had a black spot in my eyesight and became very ill with what I thought was a chest infection I went to eye hospital and it was then diagnosed with GCA.
You will feel odd taking pred, especially high doses, it’s such an unnatural drug our bodies are not used to. You will get better, or at least adjust to it eventually, but it takes a long time, you must rest when your body wants to, don’t fight it, it will only make you feel worse.
I did put weight back on when I was on high dose so I cut back on carbs, also, as you cut down pred the weight will drop off, I am on 8mg pred at moment, and back to where I was before, underweight, don’t really understand why as I eat normally now.
Stick with this site as they really help, I’ve had so many questions answered from the lovely people all going through the same thing.
So funny isn’t it. We are all individual with bodies that react in a different way. I have been dropping my pred but that really hasn’t made much difference to my weight. I’ve been trying intermittent fasting ( not intimate fasting as I’m prone to say sometimes by mistake😱)I already do very low carb so watch this space. And yes a very helpful site . X💐
Hi, sounds so similar. My visual changes were probably the first thing I noticed although I did have pancreatitis last year which may be connected. To hear you have reduced to 8mg is heartening. Very best wishes.
I can add a couple of things which may be worth thinking about and speaking about to your doctor.
I was diagnosed with GCA in April 2020 after 3 months of illness, so I'm just over a year down the line now. Like you I had never heard of this illness and had no idea what was making me feel so bad. I thought it was a reaction to stress/tension too, following the sudden death of my sister. I started on 40mg of prednisone but there came a point when I got "stuck" and the inflammation wouldn't continue to come down. My doctor (at the hospital) put me on Tocilizumab weekly injections at the end of August 2020. This enabled me to taper off the prednisone more quickly and I took my last 1 mg mid January 2021.
Since then I have been on weekly injections and for the last couple of months fortnightly. I feel much better off the prednisone but it's not the only thing that causes side effects. The condition itself and all the vaccines I've had have caused plenty. Also, on the weight side of things, I lost 22 lbs but with the medication and less physical activity, I have put it back on again and I am at the point where I must be very careful not to increase anymore.
I took notice of what the others on this forum had to say about resting and watching out for symptoms. I am retired but I do voluntary work so use the laptop a lot and I find this useful to take my mind off things. I expect your work will have that benefit too. Three weeks ago I played my first 9 holes of golf in over 18 months. I was amazed to be able to do it. I played 18 a week ago in a competition and I have more dates booked in for the coming days. I know I'm not out of the woods yet but just wanted to let you know that there is light at the end of the tunnel and Tocilizumab has played a big role in that for me. There are others on the site who have been prescribed this too.
Thank you for responding and letting me know about the injections you’ve been having, sounds like a different approach. Seems to be working for you, if you are able to play golf you must be feeling better and so good to do something you enjoy. Very best wishes.
Hi and welcome. Can understand why you would feel overwhelmed at the moment. Things will get better and it’s important to realise that you are ill, you need to pace and to look after yourself. Something I would guess many of us on here have not been used to doing but being available for others. I was reminded of this in your post”l am more than happy to give support to others” Which is lovely and will be very much appreciated- when you feel much better yourself first. Sometimes it’s a case of being selfish and putting ourselves first- something that maybe goes against the grain for some of us. Xx💐
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