Hi everyone! I'm an Aussie and been diagnosed GCA since last Friday. After four months of headaches, and some weird variable symptoms of joint pain, fluctuating virus like symptoms and some just plain episodes of feeling weak and wobbly, I visited the GP. Blood tests showed ESR 82 and i was asked to immediately go to the local hospital to be investigated for this condition. I was put on 60 mg Prednisone immediately as all the tests were done over the next week. All tests were clear except the Biopsy which confirmed GCA. My day to day functioning has plummeted further so that I am behaving as a very ill person when I am only 56 and feel otherwise well. By this I mean i have suddenly found that daily living tasks require all my energy and there is nothing left to get on with the day. Ive had some hours of feeling so drugged that I am scared of passing out and yet other times of course the wired state of the steroids.The headaches are still there intermittently but I manage them with over the counter paracetamol. I am yet to even see a Rhuematologist but know I am in the waiting line for the public system. The nearest private one is 5 hours drive away. I know its very early in the piece but any advice on how to manage this condition would be very welcome. My heartfelt commiserations to everyone on this forum! Thank you for contributing to our knowledge base and sharing in the challenges.😀
Just Beginning...: Hi everyone! I'm an Aussie and... - PMRGCAuk
Just Beginning...
Hi and welcome!
First of all - you have a serious systemic illness and one of the essential things at present is to acknowledge that and BEHAVE as if you have a really bad dose of flu for a while and REST to give your body a chance to recover and heal itself.
At the top of every thread is a pinned box with a link that takes you to the FAQs which are classified in alphabetical order. - there is lots of info under G, for GCA, Learn to find your way around them so you can browse them when you are wired and can't sleep.
And there will be more along with their penneth-worth.
Thank you so much. for your swift reply. I shall spend some time roaming the FAQ's . I really appreciate your input. It takes a lot of adjustment to the shock of this being real. I suspect my body will now have to take the lead and not by headstrong brain! Have a positive day!
Here in Europe it is close to bedtime!! There will be Brits around for a while and the USA is awake now too!
Where in Australia are you - we do have several of your compatriots but not all very active.
Mareeba in Queensland. Drive 1 hour from Cairns.
I've been to Cairns and a bit into the rainforest but not as far as you. Just discovered Tjapukai is closed - gutted, It was amazing. More Covid collateral damage.
Yes, a real shame to lose big cultural attractions. Cairns area slowly recovering from the hard years.
Hi Leafsong! I am a fellow Aussie recently diagnosed with PMR and GCA. It’s a steep journey but trying to stay positive. Good luck with your journey!
hi and welcome - I does take time to get your head around things, and high doses of Pred do give you peaks and troughs.
Have a look at this for general info, and hopefully some help on getting you through your GCA - but please just ask anything, anytime….
hi and welcome to the forum. I am sorry to hear you have GCA but it looks like you are being looked after. Good luck in your GCA journey
Hello and welcome.
Yes, you'll feel a bit bewildered at first and probably quite overwhelmed by your diagnosis.
Learn as much as you can about both your condition and the steroids from legitimate and reliable sources (none better than here) and the more you educate yourself, the more fear and mystery you'll remove.
It definitely feels scary at first but eventually you'll 'settle in' to your diagnosis and feel more in control.
This forum is here to support and advise you as it has me and many others besides. Use it whenever you need to, and ask as many questions as you need to.
Accept that your life will change for a while as you adapt to some of the transitions your health will undergo but focus on what you can still do rather than what you can't.
You will be okay....most issues you may encounter will have been experienced by others so you'll have a wealth of advice and knowledge to draw from here and you won't be on this journey alone.
Thanks so much. It seems like an excellent place to land. Really appreciate the reassurance of not being alone.
Hi Leafsong66,
I'm down in Melbourne and as others have said there are a few of us around in au. If you search 'PMR and GCA clinics in Australia' you will find a number of contact points including in Brisbane who may be able to provide you with additional contacts in the Cairns area if you need them.
I am a number of years diagnosed and the journey so far has been ok with a few ups and downs but mainly good. This site has been invaluable for information and support and are a group with a wonderful sense of humour. They are even around in the middle of the night 
Cool! Nice to know, that there’s help out there. Early stage seems so devastating for me, but hopefully I’ll get some help and answers once the Rheumatologist gives me an appointment.
Yes it is devastating early days… but now you have a positive diagnosis [which isn’t always the easiest to get and can lead to lots of dithering by medics] and are on Pred you are on the right track.
Not going to say high doses of Pred are easy to negotiate, but you have to remember it is protecting your sight [probably one of the most feared thing about GCA] - and hopefully you will be able to reduce it reasonably quickly once your illness is stable … but not too quickly to induce flares.
Stick with us we’ll get you through …..
Hi Leafsong! I am down in Tassie where we are currently being blasted with winter which makes a change from the very mild one we have had so far. We holidayed in Yorkey's Knob for 2 weeks last year and I ziplined through the Daintree Forest - this proved not to be the most sensible thing to do with PMR! Was Tjapukai the Indigenous dinner and show just near the cable car station ? It was closed when we there too........We were really disappointed.
Being diagnosed with GCA is tough but listen to PMRPro when she says it is a serious systematic illness and look after yourself. The best thing you have done is to find this site. I would be LOST without it!
Depending on the rheumatologist you eventually visit, remember that some of them don't know a great deal about our conditions. I went to one who said I couldn't possibly have PMR because it only lasts for 2 years. I have had it for over 6 and there are many on this site much longer. Also beware those doctors who want to get you off steroids as quickly as possible. the disease takes as long as it takes and a too rapid taper will result in flares. I don't know much about GCA but there are those on here who do.
I do understand how overwhelmed you must feel. Try to learn acceptance and stay calm - not easy I know! I think learning all you can about the disease gives you some sense of control. Learn to pace yourself and maybe only try one small victory a day (e.g today I changed the sheets on my bed)!!Take comfort from the fact there are hundreds of us on this site, all supporting you and here to offload to on those bad days. Have a good old Aussie whinge!!! Keep posting and asking questions. All the best......
Tjapukai yes, aboriginal cultural centre at the bottom of the cable car. GLad I went there in its hey day!
I give the cleaner the job of changing bed linen!!!! And vacuuming ...
Lovely to hear from other Aussies! Your kind and experienced words mean a lot!
I’m very privileged to live in this beautiful part of the world. But we also were planning to come to Tassie finally this year! All holiday plans seem too difficult right now but I’m trusting there will be some improvements that make it seem more realistic. Thanks again!
It will... just needs a bit more forward planning -😏- and ii will still be there when you feel up to it...
Albeit further on than you with my GCA experience , I flew from UK to NZ - after a much shorter trip from UK to Spain as a trial - on my own after my husband's death.
Life doesn't stop with GCA, it just has to slightly amended ... 😊
Do contact t me if you do decide to come down to Tas. We run a holiday cottage just outside Hobart at Blackmans Bay. It's called 19 Blue. I'd love to meet you.......!!
It’s a deal! Would love to meet up! Was flicking through your old posts about the Audition and your acting work. Did you get the part? Are you enjoying better energy?
,
No, I pulled out knowing that I don't have the energy to survive a season and I didn't want to commit to something I couldn't see through. Managing this disease is about knowing your limitations but it was nice to dream for a while.Thinking of you........
Oh, Feel for you in that. But it’s certainly wise to be realistic about things. Lovely thought to keep dreams going. I think we creative types have an edge in survival of these challenges.😍I’m off to see the Rheumatologist for my first consultation tomorrow. I’ve laid low all day in preparation for making the trip. Hope you are doing well?
Good luck with appointment - hope you get a sensible one!
Thanks lovely lady! From all that I’ve read, you are a mighty force for good on this forum. My heartfelt thanks for all that you do!
Do let us know how you get on......
Shall do. Being very sensible this morning… horizontal and happy. The denial in my head is very strong but as soon as I do a task like have a shower, I am left in no doubt that this is reality ( for now). Feel like someone with cardiomyopathy. Just have to find the strength to get to the hospital appointment and I trust all will go from there.
Prayers and Blessings flowing your way......
Sorry to hear you’ve been diagnosed with GCA. As DL says, it is devastating at first. Your initial reactions are typical. The eye doctor who initially diagnosed me warned that the treatment is brutal, but it saved my sight. At the start I had no idea what was GCA and what were the steroid affects. It was as if my body had gone haywire, which it had! The first month I couldn’t care for myself, I was completely out of it, exacerbated by little sleep/bodily rest. The good news is it gets better. Over a year on and I’m in a different place. Rest as much as you can in the early days, ask on here if you have any queries as there’s so much experience and I’ve learnt a lot. Speak to your GP if that’s possible. I don’t know what the Australian system is like. I have visited some years ago, once for work and once with the family. We stayed near Cairns and had a day trip up to the rainforest, so beautiful. I wanted to go back but I think that time has passed now.
Such a helpful reply. I read it out to my husband, who is having to get his head around what’s happened to his normally active partner.
I found the communication with others about GCA difficult, not least because I became ‘not myself’. I really hadn’t a clue what was going on. I’m the organiser in my family and I had no energy, desire for anything, felt like it was a personality change. My husband was with me at my Rheumatology appointments and took me to the hospital eye Casualty when it initially kicked off so he soon got clued in. The steroid effects for me have been grim, especially on the high doses but have eased since then. Insomnia was a problem for months and I wish I’d asked for help sooner as I did become depressed. Eventually, after discussion with my GP, I’ve had a course of anti depressants which have really helped. Not everyone suffers all the effects and they get better on the lower doses. You will get to read what your body needs re a balance of rest / gentle exercise. I do eat a healthy diet, have only put on the weight I lost prior to diagnosis but also don’t deny myself the odd treat. Good luck, yes it’s awful for you at the moment as you try to fathom this strange illness but it will look different a year from now. Take it easy and share your questions and any worries on here. Everyone is so kind and helpful.
Also let your husband read the link I sent you further up the thread - it's aimed for families as much as for you. The more he understands your GCA, the better both of you will cope.
Welcome! I but have PMR and so far no GCA (same age).I did have a few symptoms back in February..but nothing came of it. You have found the best place here, the people are SO helpful and understanding. You will feel better, you really will..both physically and mentally. I am happy you got a real diagnosis, the not knowing what the heck is going on is much worse. Stick around, it will really help!
Thanks so much! Great to know I can get some practical advice and not be my own worse enemy about this abrupt interruption to normal life. Thank you for your kind post.
Hi leafsong I am an aussie too far south coast nsw.I have had this and been on high pred since February.I was well be4 this.my biopsy and ct angiograms w e re all negative as i had been on high dose of pred for over 4 weeks when they were done but.. i have the symptoms so they going by that.At the momenti am down to 30mg pred and tapering 1mg per fortnight as i have ha d 2 flares at 30mg and under.The hardest thing is being kind to yourself and listening to your body.Some days I cant do much at all other days bouncing on all fours
Welcome Leafsong. It is not great at the start of the journey with the amounts of pred, but rest assured over time it gets better and you will feel like yourself again. As everyone says, we have to take it easy and go with the flow cause ploughing through doesn't work.
Sounds like you are being looked after by medics, but the next stage is to get a tapering plan to try and make sure you're on each dose of pred for the right amount of time. If you haven't had notice of a rheumy appt within a couple of weeks, get onto your family doc. In UK they can also give you a plan - well mine did.
Also starting a symptom diary helps because with GCA as we reduce the pred it can be tricky understanding what is illness and what is the steroids - we learn this over time.
Best wishes, ask for help anytime. This is a lovely forum.
Welcome to the club noone really wants to join! But there is good support on this forum which is very helpful. I'm in the U.S. ad was diagnosed in June of 2021, so just over two years. I also had "flu=like symptoms." which, at the time, I thought might be covid. but tested negative. Feel free to read my profile, but it was a low grade fever, along with other symptoms like scalp tenderness and fatigue, that unltimately led to my diagnosis. 60 mg pred. definitely caused insomnia, and then weight gain from eating too many "munchies." But the pred. did make me feel better very quickly. It was all new to me, and took awhile for me to accept this is a long term illness and doesn't necessarily resolve quickly, as many things do. Overall, I've done quite well, able to do most normal activities. Hope you're feeling better!
Look after yourself!
In the short term, while you are on a high dose of pred, you will probably have all kinds of side effects, but don't worry, a lot of these will disappear as you get down to lower doses. If you start putting on weight fast, you just need to reduce your carb intake. All the best!
I was diagnosed in 2018 and remember those early days and feeling exactly as you described. I’ll never forget being so incredibly drugged. On top of that, we need to tell our friends and family what our diagnosis is. Who has even heard of GCA right, unless you have been the unfortunate one who has it. At the time I didn’t know enough to share all the things I should have with everyone. I have learned so much from this forum! I am still on prednisone and have been told I will be on it for the rest of my life. When I try to lower my dose (I am on 5 mgs), I get so exhausted, moody, weepy, so I’m still explaining to everyone what is wrong and why (adrenals, flares), that sometimes I feel this is just another sucky part of the disease. Trying to explain me and my body’s reaction to it still boggles my mind. I wish you nothing but luck and easier days to come. You will be in my prayers tonight!
You are so kind. Am now more than drugged, breathing is hard if I talk too long or am moving for more than a few minutes. Am booked for an urgent first consultation with a Rheumatologist in two days. My GP has explained my case over the phone to the specialist who said, it’s either a rare muscle reaction to the 60 g of steroids ( only 2 weeks in) or there’s more inflammation going on in other arteries. So I’m having no choice other than to lie stil. At least now I don’t have to make all the mental decisions about pushing or denying that this is my current situation. I had been pushing through pain, fatigue etc for some time. Anyway thanks so much for your prayers I am grateful . They are gold!
The specialist sounds on the ball at least - sometimes it has felt as if we are the only people aware of those possibilities
Just give in at these high doses Leafsong. I can barely remember the first month or so on prednisolone. I had no energy for talking and everything felt like lead in my body. Could hardly lift my head off the pillow much of the time. Felt like I was going crazy and worse than prior to diagnosis, apart from the horrendous headaches receding. Glad you’re seeing a rheumatologist soon. It did all calm down for me after a couple of months. Lean on your family if you can. It will improve, it just doesn’t feel like that for you at the moment. Keep us posted.
Please keep us posted!
Hi Leafsong, I live just outside Brisbane. I was diagnosed six years ago after losing most of the sight in one eye, had never heard of PMR/GCA and had no idea what was involved. I can't imagine where I'd be without the marvellous people on this site. Stay in touch and your journey will be much smoother. All the best.
Hello Leafsong, I felt the same way! I was in such shock. I was my normal, crazy, active self at 62, then suddenly I was disabled to the point of hardly being able to get out of bed and having to use a handicap toilet because I had GCA and PMR and my legs and arms wouldn't work. I was in total disbelief as to what was happening. I felt like my life was suddenly ending. It's been just one year now since my diagnosis and I've accepted it more, but it's still not easy. I miss my old self. I miss being able to say yes to every single fun thing I want to do. On the flip side of it though, I've learned to say no to people and things that I can't handle anymore. I was physically fit and I lost so much muscle and strength, but I'm trying to build it back as much as I can. It's a crazy head trip, so confusing. I'm right with you on that. Like the others have said, it's great you found this site--it's been a life saver. In my experience, the people on here know way more than the doctors do, as it's what they have dealt with personally. As far as sleep goes, I had trouble on high doses of Pred. I now take a 25mg CBD gummy (not druggy kind, no THC) 3/4 of a Benadryl tablet, and a 2.5mg Melatonin. Maybe that sounds like a lot, but in my opinion it's all safe stuff and it works for me to sleep all night and feel good in the morning. I suffer with depression & PTSD so I have to be careful with my sleep and this is what works for me. We're with you, you aren't alone. xo
Oh that’s great to know about the aids to sleep. Really appreciate your generous sharing. This forum is a great blessing. Very therapeutic to be heard and understood. What a journey you have been on in this past year ! I really feel for you. The mental adjustment is huge! I am still in denial being so early in the piece. When I am lying still there are some lovely intervals when I can pretend that this is a figment of my imagination. Of course then I worry I really did make it up and I’ll be in trouble for wasting everyone’s time. However the effort of moving brings it all back and I am perhaps one moment closer to accepting that this is my current reality. Have been also benefiting from being very grateful for everything and knowing the love and prayers of many people. Really hope you continue to improve and thrive in each day of precious life. Thank you for posting.
I felt the same way, when sometimes I'd be in bed and forget I had it, then be suddenly aware of it again. I was in denial for so long and I couldn't help it. Also our spouses go through losing the person we used to be. I get inspired by some folks on this forum who have gone forward and after some time have become strong physically again. I also used gratitude, meditation, and prayer big time! I haven't heard any great messages or wisdom from the powers that be, but it has helped me stay sane and balanced. Sending you wishes and prayers for all of it. xo
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