Hi, I'm new to this forum but hoping to learn from others' experience. Diagnosed with GCA 10 weeks ago, (PET/CT) on 50mg prednisone daily, dropped to 40mg 2 wks ago, tried 20mg methotrexate for 4 weeks but felt terrible so that was stopped. At diagnosis I was still quite active, kayaking and walking, but since have been too exhausted to walk far and can only lie on the couch, dozing in the afternoon , sleeping at night and waking exhausted. I assumed this was due to the medication but am no better after stopping methotrexate. Does GCA cause this fatigue? What with the steroid moon face, palpitations and this crippling fatigue, life is pretty bleak (tho I know I am lucky to have no actual pain, just jaw/tongue and limb claudication, headaches have stopped) I start Actemra this week, and am hoping for a miracle! Any advice or feedback very gratefully received!
Many thanks,
Happy Explorer
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Happyexplorer
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Thanks so much for the fast response DorsetLady!I have read the posts you suggested and am very impressed with how positively you have coped with the loss of sight in your one eye and also the sad loss of your husband😢
It's reassuring to find this forum, I am in Sydney Australia and there doesn't seem to be a local equivalent.
Seems like I need to be realistic regarding my expectations and just go with the flow....and count my blessings that my eyes aren't affected. Just glad I gave up work in July as am living like a dormouse currently
We have a few Australians on here, actually most I think also have GCA, hopefully they be along soon to chip in with their experiences - Rimmy and LemonZest11 spring to mind. Maybe have a look at their profiles. Also a good contingent from across the Tasman sea.
Stick with us, we’ll help your through, and any question, any time, there’s always someone around.
Thanks so much to everyone for the generous and incredibly helpful responses- apologies if I haven't answered anyone specifically, I'm logging off for a bit now.
I am so grateful and now have a much better idea of what I should expect and how to manage this wretched GCA.
I've also found much more information on prednisone and Actemra from other posts and feel I have been on a huge learning curve since finding this forum. I'd felt I was handling the diagnosis really badly, apologising for feeling too fatigued to make plans and being so lazy/sleepy, but am now reassured it's all part of the disease and that there is light at the end of the tunnel..... eventually🙏😉🤞
Hello and welcome. I was at your stage in early 2017 aged 54, very active and working, and I can say that the first months can be a nightmare whirlwind of symptoms, side effects and worry - it does get better. It really doesn’t help that most docs don’t tell you about what you’re feeling now which sounds quite normal. At a time when you feel least like it, it is time to start reading and the FAQ’s on the right of the page, here are a great start. The main points to remember right now are
1) Your body has gone a bit haywire and is attacking some of it’s blood vessels and will stop doing this in its own good time. It comes with fatigue and feeling quite rough especially while it is very active, so take it very easy. Normal life has to stop for now.
2) The Pred has got your back and is stopping the inflammation causing worse problems. It comes with a weird but wired fatigue along with all sorts of other things on the list, not all of which you will get. Often it is the lack of preparation for this that upsets people because the feeling of being out of control, lack of sleep etc feels wrong but you’re not told that it’s quite normal but not permanent.
3) You need to spend all your resources on looking after yourself; this is a serious illness that will resolve but your body needs your help.
4) Pred is not a cure and other drugs are meant to reduce the amount of Pred needed, not replace it. They work for some and not for others and some have no problems and some have awful side effects. See how you go but remember there are plans on paper which may or may not suit you as an individual, so pipe up and stand your ground if something isn’t right for you, as you have already.
5) Start now with a very low carb, low salt diet to stop the wild blood sugar swings, weight gain and fluid bloating. Again I haven’t heard of anybody being advised this by many docs who seem to see ballooning weight and diabetes as inevitable and tell tales of doom. It’s not, and many here can attest to that.
6) It does get better, but for now just take each bizarre day at a time.
7) Reduction of Pred dose, especially if in big jumps, come with withdrawal side effects too, so sometimes you have to call a slow down if you are suffering too much. These tend to kick in within a day or few and last a few days to a week. In the end you’ll know what’s what.
You’re ok, listen to your body not the head if it bleats on about what you should be doing.
Thanks so much for the wise advice...my Rheumo is lovely but really only concerned with the jaw/tongue/limb claudication, not so much with effects on daily life, so your response is very helpful 🙏😊
Unfortunately this deathly fatigue is a prominent feature of most autoimmune diseases, caused by the disease and made worse by the drugs we have to take. Over the years I have found that a nap after lunch is the only thing that helps. My body has decided that it should be 90 minutes. I go properly to bed, it is more effective than dozing off on the sofa. It no longer effects my night sleep and is an integrated part of my routine. So as I have said before, do as the Spanish do and have a siesta. I also find that little changes in routine brighten me up considerably. I went to the cinema yesterday, early, on a concession ticket. I had the whole place to myself. Came home, napped and felt cheerful for the rest of the afternoon and evening, much more lively. Escapism- we need it.
Thanks for your reply Sheffield Jane, and such sensible advice, although I hate to hear you say 'over the years'! I have been hoping to be back to normal and able to enjoy travelling again by May 2022. Feel at 74 I need to cram as much active life in as possible🤞🤞🤞🤣
I travelled to NZ (my daughter lives there) with GCA and SheffieldJane travelled to Australia (her daughter there) so it is achievable- just needs planning…and Covid to be better controlled!
Travel isn’t out of the picture, but you may have to make adjustments. This condition is life changing, but not necessarily in a bad way. You reinvent ‘normal’ and discover a new world. It’s a bit like going to the same hotel every year thinking that no other will give you the same pleasure, then you have to change it and a new world opens up. I learnt to stop and look instead of being superwoman for everyone else all of the time at top speed.
yeah, I agree with travelling. Husband and I have a motorhome - I won't drive it at the moment in case I 'feel tired' half way up a motorway. But if something like this is within your financial reach, I can really recommend it. It's 'isolation on wheels'!
This is such good guidance...I just launched a new post on this very subject...the fatigue makes you feel like a bit of a wimp..not being able to contribute to life as you used to....acceptance and patience are difficult for me...but trying to adapt...like the siesta plan 😴
“not being able to contribute to life as you used to....”
This is what I find the single most difficult thing - it’s the one that brings me to tears - but acceptance and patience are undoubtedly the key to dealing with it, along with being happy that other people can do things still….. xx
If you have spent your whole life being the “go to” person, planning and organising and putting others first. Working hard, achieving, if it is sports, training and winning, never having a lazy moment. Then this is your opportunity for a re-boot. Press the re-set button. This is your chance to rethink your whole purpose and maybe that is just to be.Just lovely, lovable you in the peace of your life.This forum is full of terrifyingly efficient people and we got sick. Something did not suit us. 💝🌷
I know you must have some similar experiences, to have immediately understood me so well. Yes, I have always been a ‘go to’ person, working more than one job pretty much always, caring for my dad who fell physically ill on my 21st birthday and never really recovered for thirty years, then for my mum who as you know had dementia.
Currently I have a friend who’s just had a heart attack, another coping with terminal cancer as a widower, and so on. And I love supporting my adult daughters and looking after my pre-school grandchildren 😘
I’m my own worst enemy really, aren’t I ? 🤦♀️I was pretty efficient and I find it very hard to just be 😳 No choice now though really, have to pace myself so I can do at least some of what gives me a purpose in life.
Thank you so so much again and take care of yourself 😘xx
Very insightful...applies to me too.. I did need to stop giving everything to others, some of whom took it for granted to be honest. So, yes big reset button. Thank you for this.
Thank you for your very honest reply....I so agree...spent 25 mins in my garden today and that was my limit...first time since diagnosis.. very light tidying...as you say, it could bring tears. I took a photo though and listed it in my 'what have I achieved today ' rather than being sucked into the ' I would spent 3 hours before' black hole of emotion. Wishing you strength on your path..we will get there. I'm not positive all the time by the way....easier to support others than yourself isn't it...x
Hi Happyexplorer. Welcome to the "club no one ever wanted to belong to" You've been given all the advice needed to start your journey as well as possible. They know their stuff. I've just reduced slightly too far and hving to go back up so do try and take it easy for now and don't expect to be back to "normal" recalibrate normal. I keep having to change normal as each phase of this disease plays out so be prepared to adjust daily sometimes. Have fun, it's not all bad. It just seems that way at times.
Yep, PMR/GCA, pred, mtx all wipe you out, so you can't even tell which one is doing it! And however philosophical you manage to be, it's still hard not to be able to do the more active VERY IMPORTANT things. But I envy you getting to Actemra so fast, and I hope it works a miracle for you too.😀
Thanks Sharitone. Actually am getting Actemra on private script as have been so desperate the last couple of months. Sadly the application for pbs(our NHS) subsidy passed as my rheumo was reluctant to prescribe due to the stock issues and then I didnt meet the blood level criteria as I had been on prednisone and the CRP and ESR were near normal. It is about $806 a month here in Aus and am hoping it will be worth it!I'll certainly post my progress🙏😊
Happyexplorer I don't know if this is helpful or not, but I have always suspected the prednisolone knocked me out more than the PMR. That is not true for everyone though. Anyway 10 months into taking prednisolone I have finally split the dose to a smaller amount after breakfast, a larger amount after dinner. My quality of life has increased immeasurably. Now I don't sleep all day and lie wide awake half the night. Hooray, the reverse! Fatigue still hits during the day, but not the dreadful need to sleep the day away on the couch. To split the dose, I moved slowly - one mg a night only till I reached the split dose of 5mg at night, 3 mg in the morning. So far it seems to work. All the best to you.
Just for info, split doses may work okay with PMR (and good it’s does for you), but not really recommended for GCA, especially early days….and I suspect the inflammation in Happyexplorer case is due to illness at this stage.
Thank you so much for this observation Dorset Lady, you are probably right, best to keep the high Pred dose early while GCA symptoms so much in evidence. I am so lucky not to have other commitments so can rest as needed.....I managed to get through stage 4 Ovarian cancer 7 years ago but this fatigue is worse as no real 'good days' like one gets with weekly chemo. Still, its a small slice of one's time on the planet so best just get on with it!
Thanks again for keeping a watchful eye on the posts 🙏😊
You're absolutely right DorsetLady. I read the "fatigue" and not the "GCA" - very different issue. Sleep is corrected. Will have to work on the brain fag now.
Thanks Redruth, that's really interesting.....I am a basket case currently...went to a local movie this arvo and was weeping with exhaustion half way thro the movie and just limped home to lie down. I seem to be making very heavy weather of it all at the moment...but will just hope TCZ helps me drop off the prednisone. I am so gratefully for the helpful advice tho. xx
so sorry to hear this Happyexplorer. GCA must be a challenge indeed - PMR is bad enough- I wish you much better days ahead and more Happy exploring when you can. See my reply to DorsetLady - apologies - I missed your GCA, so my reply was not relevant to your current situation. Brain definitely not in gear
Everyone is different but my experience of GCA is that the first months on high levels of Pred are bad with medication side effects but this gets better as levels of pred reduce. I felt a lot better when I got to 17.5 and as I reduced further felt like my old self. So there is something to look forward to. As everyone has said, patience is required, keeping active within new limits and resting when needed. The worst thing is possibly the anxiety, so it is important to know that things get better and your energy levels will slowly return.
Very best luck to you - I’m GCA, 15 months, and while I have all sorts of unpleasant side effects ( of illness or Pred, hard to know sometimes ) I haven’t experienced the intense exhaustion you describe. Follow all the brilliant advice on here, this forum is such a wonderful support, as you see
PMR/GCA can be accompanied by an illness called "anemia of chronic disease". your body has enough iron, your cells are damaged and can't take it up. Have your doctors run the correct blood tests looking for this type of anemia. Prednisone did not make me tired. Prednisone at high doses makes me high. Moon face, dowager's hump, weight gain, all went away for me when I started Actemra, Actemra is not a miracle cure for me, but it did allow me to get prednisone down to 5mg. Sounds like your case was caught early. That is good news. Just be patient, give in to the fatigue. That is your body telling you it needs the down time. Be kind and gentle to yourself. At first Actemra may make you feel even more fatigued, especially the first few days after the infusion/shot. Give it time. I am 9 months on infusion, and this month I felt good for 3 weeks. My infusion is in two days. Actemra has given me my life back. Ignore the scary side-effects listed on the internet. Don't even read them. My rheumatologist told me to ignore them. Many are on litigation sites wanting to file law suits. Actemra is the only medication for GCA that actually treats the illness, and not just the symptoms. Prednisone is not a cure. It treats symptoms so we can ride this illness out. Many/most are greatly improved after 2 to 4 years. Me, 21 years PMR, 12 GCA. My case was misdiagnosed for years. Sounds like your case was caught early. Also, it sounds like you have excellent medical care. So, cuddle up on the sofa, relax, and smile knowing you life in a day and age when there is such a thing as Actemra, and PET scans, and the like. Can you imagine having this illness in the age of Henry the VIII, or the mid 1800s. We would already be dead.
agree with the last part phebamom. Undiagnosed it would kill you for sure, still would I'm guessing, well that is what I thought only recently. That's a worse delay for you than mine so must have made it harder for you , so sorry. Does Actemra actually treat the disease? I thought it was just another more effective assist for the taper.
I'll never forget the shocked expression on the face of a doctor when I replied to her casual comment, "PMR doesn't kill you", with the words, "Sometimes you wish it would".
Tocilizumab directly blocks the action of inflammation-causing IL-6. I don't know if it also prevents it from being produced by the body, or just renders it ineffective.
If it doesn't stop it that means one would need to keep taking it or the GCA would still be there and possibly reemerge. I do think this disease could kill DL. It cuts off oxygen and contracts the muscles. The headache , loss of sight and possible starvation to the heart might do it but I can't see anyone recovering in days of old without the benefit of a drug that could stop the inflammation.
There's an OUP paper which states that 50% of patients who go into remission using TCZ will have a recurrence of the disease within 2 years. Wish I could reliably copy and paste links with this device. I'll try again.
Not saying it would never kill you, certainly if you had extra cranial GCA/ LVV….but many patients have other serious illnesses as well…so which is the suspect. My point was that in 1800s the average age of death was mid 50s whereas in 2000 it’s in the 80s age range. So in 1800 very few would have lived long enough to actually get GCA.
good point. If it is stress related maybe they didn't have the type of stress we suffer but then that is hard to tell because the thought of facing death from personal combat or as a lowly farmhand given a pitchfork and told to join the feudal lords(pre-1800 as in HVIII)armed contingent would cause severe stress. Guess we are just lucky to live in such a priviledged age when we have so many opportunities for a healthy and active old age.
I imagine their stress was probably a lot worse than ours, with the daily struggle to just exist…….poor housing, poor if no sanitation, poor health, poor food … it’s a wonder they actually lived to 50! but then they weren’t bombarded with the minutiae of 21st century garbage……🤨
Well under a feudal lord they didn't have the stress of finding employment. They worked from dawn to dusk at whatever their parents job was and there was no alternative. I guess we are really fortunate and whatever we suffer from we are blessed with the opportunities our life offers. It was a truly hard life back then and anyone who lived to 50+ was an exceptional person.
Thank you. Yes. GCA can kill. It most certainly can cause blindness. One has to wonder how many strokes were caused by GCA before medicine knew what GCA even was . We are living in an enlightened age concerning medicine and health care.
cheery isn't it how close we came maybe. I certainly came close and still wonder how I'm here chatting along merrily. Guess I got the "lucky" gene. Ironic really.
Okay, when I say we would already be dead if we had lived prior to modern medicine, it is likely true. Think about how difficult this illness is with modern medicine. Take everything away we have to be grateful for, including running water, central heat, and a regular food supply. I believe many probably died from illnesses that are treatable and can be managed in this day and age. Imagine being a diabetic before the invention of insulin.
that leaves us with the hope it goes into remission and that will need us to sufficiently modify future expectaions of what we can do so that we don't recreate the stress that probably made it come to the fore. then we are still faced with what do we take to keep it from troubling us if it comes back pred or an expensive alternative they are not keen to give us?
How are we doing Happyexplorer? You did ask and in all honesty this blooming disease is a bu**er to work out. There are so many ways it can mess with you.
Ah Cycli, and everyone else whose been kind enough to respond, I've been overwhelmed at the wisdom, warmth and support since first posting a couple of days ago! My PMR was relatively mild thro 2020, never needed more than 10mg prednisone and weaned off it by December. In March 2021 I had daily headaches and scalp tenderness, Dr google told me it might be 'burning scalp syndrome' Lovely GP did a CT scan and discovered narrowing of some arteries in my head...but headaches cleared up. Then in July I developed the stiff jaw and tongue, I checked with my dentist, bought a mouth guard and finally went back to GP who thought maybe a reaction to tooth whitening kit. (ah vanity!) She did a blood test, and I got a copy and saw the CRP was up, began to put 2 and 2 together and realised the stiffness in hips and shoulders wasn't just from Covid sloth, but the PMR was back and remembered my Rheumo telling me the previous year to watch out for any jaw stiffness as that was serious. So dashed back to GP, got to see Rheumo after a couple of weeks and PET and CT confirmed GCA had a firm hold. The thing is I felt fine and was pretty active, still kayaking and waking heaps. Since starting treatment I have got worse and worse, until now I'm dragging myself around and being a real moaning Minnie, as this long post confirms!I'll follow the wise advice and go with the flow.....my apologies for sounding so negative, its not like me at all really, and am inspired by a all the brave and insightful comments on this forum! Will leave you all in peace for a while and report back when I have cheerier news🙏🤗🙋🏻♀️
It took a couple of WEEKS to see a rheumy? God help us all if it took that long to be seen for a stroke or MI - same physiological cause, just different places affected.
And yes - always someone around, not just when the sun shines ...
Fatigue, fatigue, fatigue! I personally have never got used to it and it's been a year since my diagnosis of both GCA and PMR. I used to run, swim, do weights, yoga and pilates and in the afternoon.......
Sorry, I can't comment on your drugs but there are a couple of things I'd like to relay on to you:
2. If you have any problems do ask here but also, if you phone your Rheumatology helpline leave your name and relevant number AND let them know that you are a GCA patient as these lines are triaged and GCA takes priority.
If you're feeling down and can't cope, put something on here and we'll all cluster around you and give you some TLC.
as they say we are here. Don't worry about negative posts..we've been there. It helps to share and believe it or not is a pick me up. Just hang in there. I'm going back to go forward...you can't second guess this disease so just adapt and work how to go with it until it relents. GCA is a blinder in more ways than one. I'm not messing with this and being cautious.
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