I have recently been diagnosed with GCA, at least that’s what I am now being treated for. My story started in early Dec 2023. I am a very active 60 yr old, previously doing triathlons, still cycling, swimming, walking etc. The first symptom I experienced was excruciating pain in my hip flexor muscles, which soon spread to my pelvic girdle, neck, arms etc. I have never been ill in my life so I initially thought it would go away!!!😵💫 Being Xmas time it was at least 3-4 weeks before I got to my GP. She ran 2 sets of blood tests a week apart and my inflammation markers were through the roof. She diagnosed PMR and started me on 15mg of Prednisone. This really did not much and I was back to her in a few days. She discussed GCA and started me on 50mg of prednisone and referred me to a Rheumatologist. I was lucky to get in to see him in a few days as my levels were alarming! I had no symptoms of cranial GCA but I understand this can be the case. He ordered a temporal artery ultrasound which I had a week ago. I had been on prednisone for a week prior so I know this can affect the result. I also had more blood tests. I have not heard re the ultrasound results but my inflammatory markers have come down, thank god. The Rheumatologist has me on a regime of 50mg prednisone for 2 weeks, then 40mg 2 weeks, then 30mg 2 weeks, then 20mg. I am to see him again in 6 weeks all going well. I am currently on 40mg since 3 days ago. I am going ok at the moment, but apprehensive. Is this fairly standard treatment? I feel like I did not get a real lot of info from the Specialist considering it is such a tricky condition to manage.
Anyway, this is my first post. I stumbled on this site a week ago and have been reading so much great info. Thank you all so much for sharing your stories and you hints and knowledge. I have learnt so much already. I hope you don’t mind that I am from the other side of the world, but I guess autoimmune disorders don’t respect borders!🇦🇺
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Hello and welcome. Members here are from all over the place and will be along soon. They will be in a better place to comment on your situation. I am a pmr long termer - no GCA
Hi and welcome - and I'm surprised you haven't noted this is a very international forum with several members from your neck of the woods as well as quite a few from the USA! The charity is based in the UK but there are members from all over the world just as there are forum contributors. There are research groups that comprise rheumies and patients from the UK, the EU, Australia and the USA! There are differences between management in the various countries but also many commonalities - which works best is a moot point!! The primary common point is the use of corticosteroids for management of symptoms.
We'd consider that taper rather speedy but if it works, fair enough. On the other hand - if you have any return of symptoms after a drop, don't hang around, get advice from the doctor asap, that meaning same day and if you can't, go straight back to the previous dose until you hear. The recommended starting dose is 40mg if you don't have certain red flag symptoms such as jaw claudication and visual symptoms so they did have some room to play with. Never mind the inflammatory markers - how are the symptoms? They ALWAYS trump lab results.
Thanks for your reply. The symptoms pretty much disappeared on 50 mg. I’ve been on 40mg for 3 days now and I noticed a very slight twinge in my lower back today. Not really painful though. I am on high alert though, analysing every little feeling or change.
One can get withdrawal symptoms when reducing which isn’t a flare but just your body reacting to having to accommodate the lower dose. Mine tended to kick in during days 1-4. I used to feel tired, a bit achey, headache that sort of thing. It shouldn’t last more than a week. After a while one does become more used to the patterns of symptoms. At first one is on high alert all the time.
I hope you’re not trying to exercise like normal right now, because you will get a kick back. There are quite a few who have passed through this forum who have been super fit and at competition level.
Your reduction plan is faster than mine. I was on 40mg for 6 weeks after a week on 60mg. After that I was reduced in 5mg steps, not 10mg. It is difficult to see where your current optimum dose is if is somewhere in that 10mg gap. Anyway, see how you go and as has been said, don’t hang about if things start to ramp up.
Not necessarily - the level of relief you get at the starting dose is important as it represents what you should be aiming for as you taper. But it depends on what you mean by "symptom-free". Pred works on inflammation, so should relieve pain and the things caused by swelling due to inflamamtion. It won;t make much difference to brain fog or fatigue as they are components of the underlying autoimmune disorder which pred doesn't touch. And pred at high doses can cause both itself!
Free of pain and stiffness sounds like success to me! Not knowing what to expect is hard. At the moment I am pretty comfortable but I still have this awareness that the condition is still there. Maybe that never really goes away, once you have it you can’t “unhave” it.
I am not experiencing any fatigue or brain fog at the moment. But I will be prepared.
Thanks for the links, I have checked some of them out already.
It is a strange illness when it seems really hard to definitively say you have it. I am being treated for GCA, but I haven’t actually been confirmed as having it. I understand the reasons why you need to do this though and thank goodness.
I will contact my Rheumatologist re the ultrasound soon if I don’t hear from him.
All I was saying is just be pleased your GP considered it -and is and treating you as such - some are not so lucky. Few on here have lost sight in one eye (myself included because not diagnosed in time) other full sight.
Okay.. problem is with a TAB, a positive result is definitely that… a negative can sometimes be a false negative - it just means no trace was found in the sample taken [as yours proved]. But that doesn’t necessarily mean other parts of that artery or other arteries aren’t affected.
Hopefully yours is a true negative, but do just monitor symptoms as you reduce…and on if any raise concerns then speak to Rheumy. And do please report back after next appointment with them.
Sorry if I wasn’t clear about my tests. I had a temporal artery ultrasound, not a biopsy. I don’t know which is better, but I guess the scan is less invasive. My rheumatologist mentioned the biopsy but he opted for a scan instead.
Last time we were in England was about 4 years ago. My husband and I cycled the Lands End to John O’Groats ride. Fabulous. One of our daughters also married a fellow from Nottingham. They live in Australia now, but we are all going over in a July to see his mum. I have long had a fascination with English history, particularly medieval history.
I hope that I have my condition under good control by then. It adds a whole other dimension to travelling I expect. I have never had to think of my health care while away. I will be seeking advice I am sure when the time comes.
The same applies for the U/S - only works if that artery is affected and it sometimes isn't. Did they look at any other arteries? They can visualise the brachial artery - SheffieldJane had her LVV diagnosed like that - and I think also the subclavian artery.
Apart from a brief trip for graduation in November, it is over 4 years since I visited the UK properly! Just before Covid ...
Thanks for the article. I am the sort of person who loves to know as much as I can. If I can wrap my head around things, so to speak, I feel much better.
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