I was diagnosed with GCA 5 weeks ago. Never heard of it, so it was such a shock. I'm 64 fit and healthy, eat a good diet etc but then started with the headaches which got progressively worse from the end of December. I started on 60mg Prednisolone, dropped to 45mg 10 days later (told by my Consultant to do this, then 30mg a week after that and am now on 20mg for 2 weeks as I was so shaky and have the most awful palpitations f & fatigue now. So, I have to drop to 15mg next week for 2 weeks and see how I go - by which time I will see my Rheumatology consultant again. Before diagnosis I was put on Amitryptilene for the pain and help with relaxing me as I have huge stress and worry with another personal issue at the moment. Unfortunately these aren't helping me sleep or calm down, which I know is the worst thing to trigger the GCA again. I also read that Amitryptilene can also cause palpitations, so maybe not the best thing to be on at the moment? Don't know whether to ask my Doc or my Consultant what would be the best thing to go on for a while to help me. I'm not sleeping, still losing weight and these other issues (not health) are getting worse and more worrying. I still get the occasional pain in my head but just slightly and it doesn't last. I do however have the prickly, sore feeling on the one side which was worse (but it's also the side where I had my biopsy). I don't really know what a 'relapse' is or what to look out for and I'm terrified that with my additional worries that this may cause one.
Any advice/help out there-and please nothing scarey, I'm so frightened already with all this coming out of the blue. Thank you
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Janeval
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From a previous GCAer, yes it is scary, but you will get through it, but have to say I think your current tapering regime is too quick…which is probably not helping your GCA as what you describe sounds as if it’s not under control.
Although you can take bigger steps down in the higher doses,, you need to be at each dose for longer than you have been, and once you get to 20mg then a lot smaller reductions. Rule of thumb is usually not more than 10% of current dose…at 20mg that’s 2mg or 2.5mg not 5mg. So do have a think about that, and discuss with Rheumy before you do it. Do you have a helpline number to contact .
A flare is usually a return of symptoms you had pre treatment, and may come on about a week or so after a reduction…
And this explains a flare versus steroid withdrawal - but don’t try and cram too much into your brain for now, just keep for info should you need to know -
Thank you so much for the info. Everything I have read says I am reducing too quickly so I'll make sure from now on that I slow it right down - just hope my Consultant agrees. I'm so frightened that I may have to go 'up' again on the steroids. My lack of sleep is just awful and the less I sleep the more palpitations I get as I am worrying more! Vicious circle.The other thing I meant to ask everyone is - are we best to wear a 'mask' and avoid lots of people for a while? Seems I have no immunity now so I've stopped going to my Pilates & Yoga classes since January and I do miss them!
As your immune systems is suppressed yes it is a good idea to wear a mask.
Have you tried Yoga and Pilates at home -I know it’s not the same, but there are some good YouTube videos..and at least you can do it at your pace. I couldn’t have done either in the early days -but did return to Pilates as soon as I was able. And when you do feel able to return to lessons, you can still wear the mask.
Have you been told that or is it your experience? I was on just under 20mg for the best part of 2 years, throughout the epidemic, I have not knowingly had Covid - I did wear a mask from the beginning but we had no shielding here, I had to go out like everyone else to shop as there is no online shopping here. I've been at well above 10mg for a lot of the last 13 years and never found I got more infections - in fact I get one humdinger of a cold a year as I always did.
Interesting- I was just told that my immunity would be rock bottom and to take all precautions - I.e. mask wearing, not being with a room full of people etc. I'll check on that as this isn't helping me not being able to mix or do my normal things I do. Thanks for that
does make you wonder whether some Rheumatologists are from a different planet, a planet where GCA (and PMR) disappear after ‘a good talking to’. Despair!
Hi and welcome - the GCA experts will be along soon so I'll leave it to them, I'm better at PMR. What I don't like is the speed at which you are being encouraged to reduce the pred dose. If you get any return of symptoms stop reducing and get medical advice. The weight loss suggests the GCA is still pretty active, it is a typical symptom.
Like you I was in shock when diagnosed with GCA at the end of June 22. Although I suspect it was triggered by an infection, there had been significant stress in my life for two years prior to diagnosis. I have had to put myself first as self preservation kicks in. I try very hard to avoid any stressful situation as my body cannot cope with it. It’s a lot to come to terms with, especially experiencing a treatment that can feel brutal with such high doses of steroids. I was virtually delirious at times. It’s difficult to work out what is the illness and what are the steroid side effects. I’m getting much less panicky about odd aches and pains, especially when relieved by paracetamol. If they’re relieved by paracetamol it’s unlikely to be the GCA flaring.
Fatigue can be total, days up and down, a new normal if you like. I’m in my ninth month of this and things have settled down a lot. Still up and down days but more up than down. Keep a diary of symptoms, eat well, fresh food, avoid too many carbs, get gentle exercise when you can. I try to do a short walk daily, but don’t beat myself up on the wipe out fatigue days when I can’t.
I had dreadful insomnia for months, which I wish I had followed up earlier as I did become depressed because of it. Although I get a few rogue bad nights, a course of Mirtazapine has helped settle my anxiety and improved sleep. I was very emotionally labile on the higher doses but got down to 20 mg a day relatively quickly. Had a blip going to 17.5 mg and had to go up to 20 again when my CRP/ESR tests were raised but after that, so far I’ve been ok on the tapering front. I’ve tried very hard not to overdo things and stress my body. Who knows though with this illness? We are all different. It’s a day at a time, at the start it felt like a hour at a time as I could never predict how I might feel.
You really have to pace yourself and follow what your body needs. Get as much help as you can from others so you don’t feel isolated. You’re at the very difficult stage, in my case I can hardly remember those first two months. I think I was in shock for a while. It will get better. Make sure you’re getting regular blood tests to keep an eye on your inflammatory markers. It helps me feel I’m managing this condition as much as I can. I used to be quite the active person. I’m not the same person at the moment but I am managing to meet people for coffee/lunch occasionally and do a half hour walk several days a week. It’s a lot better than it was.
Thank you- sounds very similar to what I'm experiencing. Very bad'down' days at the moment and I know it's the stress and worry I have at the moment which is causing me to feel much worse but unfortunately this'other issue' is not something I can avoid. I am getting out for a walk most days and I know this does me good but when I feel exhausted I don't do anything. I've always been a 'do-er' so this is alien to me but I am listening to my body now!
I've only had 3 blood tests-one when I initially had my diagnosis & another a week later when my numbers had dramatically reduced thank goodness. I'm wondering whether to ask my Doc for regular blood tests- every 2 weeks? What does everyone else do?
I started out w blood tests 2x/month but now once/month. Sticking to PMR/diabetes diet essential along with enough steroids to maintain “good” markers. Sooo easy to slip into occasional alcohol and too much starchy stuff.
First year or so I had blood test on a month basis [pre Covid times, so easier] - and then depending on how I felt and the results my GP and I decided if I reduced.
Later on, when I moved surgeries they went down to every 3 months.
Different times, and different circumstances if you look at my story*, but you probably should be having them monthly as you are still in the relatively early days…
I am so sorry that you are experiencing a challenging time. Stress is a trigger for GCA, so even though you take care of your health, this will be a factor unfortunately. I was prescribed 10 mgs of Amitriptyline which I found helped with the insomnia, when taken an hour before bedtime. I didn’t have any difficulty coming off this amount and had no discernible side effects. DorsetLady has given you all the nitty gritty. Welcome to the site, you will find that it’s a big help.
Yes I'm on 10mg Amitriptyline but some nights it has no effect atall & I literally don't sleep so I feel much worse the next day. My anxiety is sky high at night & if I'm awake- or before I do go to sleep- my mind is racing with my stress issues I have at the moment. Trying to find a Counsellor/therapist to talk to but as with everything else at the moment everyone has waiting lists for months. I'll speak to my Doc about this today (if I can get to speak to one)
Does your surgery have the eConsult facility ? If so then use it -[less stressful than hanging in the phone, and it’s a paper trail] and ask for a referral and be honest about how difficult life is at the moment.
When I am highly stressed and the mind is doing the washing machine bit at night, I find the radio on quietly helps to distract me from some of the other thoughts. It doesn't stop me drifting off which is always a surprise and usually when it is something interesting! I find the talking is better than music. Sometimes there is an awareness how tense the body is - breathing exercises can make a big difference. There is nearly always someone on here which also helps.
Trying to talk to a therapist about your stressful life issue a good idea. Another may be to find an online or in-person support group where others are dealing with the same situation.
Diagnosis of GCA is shattering (mine was March 21). However, the experience is likely to be much better than you think. Slow and steady the ship with tapering and once you are steady on medium doses you will feel a lot better. I don't see any reason why you can't go back to exercise if your body says yes. Perhaps avoid the high cold season but that is nearly over anyway. Keep a diary of symptoms and then you will learn what is a flare and what is background grumbling.
I am more concerned about the stress you are experiencing. There is no relationship day on day between stress and GCA but it won't help in the longer term.
Sounds like you are in a difficult situation and need to take measures to reduce your anxiety which I know is not easy in the thick of things. I'd probably suggest counselling so you can talk things through and get the emotion out, regain perspective and identify any solutions. Look at your diet. Definitely go back to yoga and as you are experienced in this, try meditation techniques.
Anyway, try and take GCA off your list of worries; it will calm down, get better and resolve in time so no point in stressing now. Forum will help. We are always here.
Also, just to add, pred can make us feel extra-anxious. If you feel sometimes not like yourself and that you wouln't normally react that way it is probably the pred. For instance I went through a phase of waking up with a feeling of irrational dread for a while. I've also experienced periods of feeling antsy again for no reason. Because I know what it is, it is easier not to get sucked in.
Good news is it gets better - usually irons itself out when you're in a stable pred dose, and gets better the lower the dose (though sometimes it can pop up again out of nowhere for a while. Pred is weird). So the meds may well be exacerbating how you feel.
There's also a euphoric pred phase sometimes but that is also temporary... shame.
I was diagnosed with GCA in AUG 2022. The doc that did the biopsy said he's never seen such a bad artery. I was put on 60 mg PRED and followed more or less the same regimen that you described. In DEC I finally got to see a rheumy -- hard to get an appointment here in the states. He looked at my ESR and CRP, and listened to my symptoms and restarted me all over again in DEC at 50 MG for 1 month, 40 for 1 month, 30 for 1 month. I was incredibly disheartenedd to have to start all over again because the PRED was already affecting me terribly -- vision changes (blurry), and AWFUL, constant fatigue.
A month ago, my blood pressure went up to 200/100, and my pulse was racing at 99 to 110 bpm. I couldn't sleep. I was immediately put on BP medication and given sleeping pills. Now my BP is normal again and I suppose I'm sleeping a bit better.
I saw the rheumy again yesterday and he okayed me lower my PRED to 25 for 2 weeks, then 20 for 2 weeks. Then, he also agreed to the DSNS method of tapering (even though he has no idea what it is).
So my feedback to you is to hang in there -- I'm still fatigued by perhaps slightly better. My vision is still the pits (but I'm going to get new glasses which should help). Most importantly, I see light at the end of the tunnel and that has improved my emotional state. I know that without the PRED I probably would have gone blind, but at least for me the PRED has not liked my body AT ALL.
One more thing..... I went through PMR about 8 years ago. I was started at 20 MG PRED, and tapered down from there. I had almost NO ILL AFFECTS from the PRED back then. So I'm very much looking forward to getting to 20 again. LIGHT at the end of the tunnel.
Thank you for all your replies-all very useful and informative. I managed to get a phone call with my Doc and he has put me on Mirtazipine for the stress and anxiety i have so I will see if that helps me. I have also managed to find a Counsellor (privately - NHS waiting lists are just too long) but that's not until next month! I'm waiting for a call from the hospital tomorrow as I should be tapering down from 20mg Pred this week ( which h I've been on for over 2 weeks now) but I've had some random odd sharp pains in my head in various different places. Nothing which lasts and nothing like I had before, I also still have the prickly, sore, fuzzy feeling on my scalp- is this normal? I'm now worried about tapering and originally was told to go down by 5mg, but I told my Doc that I wasn't happy with this and that I didn't want to go down more than 2.5mg. Seems the Opthamologist who gave me the original tapering programme, the Consultant and now the Rheumatology specialist nurses are all telling me different. However, I've now managed to get some 2.5 and some 1mg tablets from my Docs so at least if I need to I can go slower if I feel the need to.
I'm finding this all very confusing and frightening and feel I'm in the dark as to what to expect. I've not yet spoken to one single person (apart from on here) who has ever heard of GCA so it feels really isolating. However, it's a great comfort to have found this forum and such useful info as well. I'll no doubt t have a lot more questions as I go along. Thanks to all.
If you’ve still got some symptoms you really don’t want to be reducing -and you need to be on current dose for longer than 2weeks -4 weeks at each dose from now on. ..and yes smaller steps down.
So presumably the pins & needles and stabbing pains I'm getting are still symptoms? They seem to be insistent I taper quicker than I feel comfortable with & having read everyone's experiences on here I'm very concerned. The consultants & rheumatology nurses advice send to be that I taper every week! I really do wonder if they know enough about it to know what's best for me! They're really not filling me with confidence atall! So you would say I should taper down from 20mg to 18 or 17.5? I've been ok coming down from 60, it's as soon as I got to 20mg that I am having more 'symptoms'.
Do you know if it's possible to ask to change hospital/consultant at this stage?
I tapered from 60 mg to 17.5 mg after two months. It was too quick and blood tests showed a rise in CRP / ESR at that point. I was immediately put up to 20mg for over six weeks. Things settled down on that dose and I’ve tapered successfully so far but have been lucky in having bloods done regularly. I’ve monitored my symptoms and kept a diary. You do start to learn how your body is reacting. Every one is different. Last week I had severe fatigue and light fleeting headaches that responded to paracetamol, so am halting my 4-6 week taper at 10 mg after an email conversation with my rheumatologist. She always gets back quickly to any queries I have and I realise I am very lucky. It’s such a postcode lottery. GCA is a serious vascular illness and you need consistent care and advice.
I’m now awaiting the latest blood results. My rheumatologist said there was no harm in staying on 10 mg for a few more weeks. I’m going slow now after a successful winter taper at a month on each dose. Avoid stress, good diet and pacing is the key. Have led a quiet life. It helps. It’s such a day to day thing and if you’re having bad side effects from the steroids it adds another dimension. It’s all so complicated and isolating when people have never heard of this illness. Why would they? I struggled to pronounce it when I was diagnosed! Take care.
"My rheumatologist said there was no harm in staying on 10 mg for a few more weeks"
One VERY good rheumy in the PMR/GCA field and his team developed a tapering approach that reduced the flare rate from 3 in 5 with the then conventional tapers to 1 in 5 with theirs. Prof Quick at the Luton Hospital, who wrote their paper about it and still does GCA research, still uses it - because it works. And THEY keep patients at 10mg for a year.
I make no apology for quoting 10 year old work when it works
As I said earlier, and with no apologise for repeating myself, most patients can reduce quite quickly on higher doses with GCA, but only if the original dose was high enough and taken for long enough for all the built up inflammation to be fully under control.
Would say your dose was high enough, but you weren't on it long enough - and that is probably because some doctors have a hate, hate relationship with Pred. Align that that with your following reductions is just asking for a problem.. you need to be on each subsequent dose long enough to know it's sufficient before you reduce again...that can take at least 2 weeks, so you need to be on it for a bit longer than that.... 3 weeks is better, 4 week the best. The problem is, when you are reducing like you have you may have completed 2 or 3 tapers before it is apparent that you've gone much too low.
If your consultant and rheumy nurses think you can reduce on a weekly basis then sorry to say, but they seem to know diddly squat about GCA which is worrying. BSR/EULAR guidelines for GCA {even though we still think they are a bit quick] say following -
British guidelines recommend the following schedule for tapering of standard-regimen corticosteroids :
Continue prednisolone, 40-60 mg for 4 weeks* (or until symptoms and laboratory abnormalities resolve), then
Reduce dose by 10 mg every 2 weeks to 20 mg, then
Reduce dose by 2.5 mg every 2-4 weeks to 10 mg, then
Reduce dose by 1 mg every 1-2 months, provided no relapse occurs
* Not 10 days
I would say, stay at 20mg until 'symptoms' have abated, and then reduce by 1mg a time...the 2.5mg mentioned above is usually too quick for most - although I managed to 12.5mg...but my previous tapers were much slower than yours.
You can change hospitals/consultants, although not too sure how easy, can you discuss with GP if they are sensible and say you are worried about your tapers so far.
Is going private for first appointment a possible way - if so, then raise a new post and ask for member's experiences and say how far you are prepared to travel.
If you live around London area, then Rod Hughes is highly recommended... and you only need to see him in person initially - and then he does tele appointments and put you on NHS list .
when PMRpro see this, and she will, she may give more info on RH
Thank you all so much again, this is all very scary for me & I feel totally lost. I managed to speak to the Rheumy nurse this p.m. & she said with my symptoms I should have blood tests to see what my markers are before I reduce, so I have blood tests tomorrow. Thankfully that will mean that I can get an idea of where I am & what's what before I reduce-if at all but I'm going to wait until I see my Consultant on the 20th now anyway.I did see a private consultant just after I was originally diagnosed (as it took weeks before anyone would listen to me) & even then I didn't get an appointment with the hospital atall. I had to ring up, call 111, go to A & E - where I was sent home & told to take even more pain killers - & generally had to make a real nuisance of myself before anyone took notice. After all this I eventually got an emergency appointment with the Opthalmologist after hours at the hospital, then with the Rheumatologist a few days later, had a biopsy (2 weeks after I started on steroids) & had more blood tests. They were so apologetic about everything & I've also had a number of CT scans & x-ray of my chest.
However, I now feel a bit lost and if it wasn't for this forum I wouldn't have had a clue about all these things to do with tapering as I haven't been told anything about it other than ' this is what you'll do' none of it has been explained!
For example, blood tests tomorrow, won't get results until Monday- so what do I do over the w.e if my headaches or symptoms come back? A & E/111? Again, I haven't a clue- I've not been told what to do or even that I could have a relapse/flare - I've only read about it on here!
I realise this is going to be a long journey & as I said in a previous post I have an enormous about of worry, anxiety & stress with a family problem at the moment too. I'm now on anti depressants & I'm on a waiting list to see a counsellor so that hopefully I can manage the anxiety before it affects my GCA.
I just wish I had faith in what I'm being told by the hospital.
The bottom line really for the real experts is that symptoms ALWAYS trump lab results. The blood markers are unreliable for all sorts of reasons - for a start, quite a few of us never had raised blood markers in the first place, or at least, although they may have been raised for us personally, they did not go out of what is described as "normal range". My ESR bumbled along at 16-18 when I was almost immobile with a massive flare - but while that is still below the top of the normal range, it was massively raised for me as my normal is low single figures. The normal range is the range of readings obtained by measuring in a large population, 10,000 is typical, of nominallu healthy subjects and then you take the middle values that cover 95% of that population - so 5% lie outside that but are normal. Snazzy will tell you, her vision was shutting down with GCA and her blood levels taken at the time were low.
Thank you, very informative. However, I'm just horrified that I haven't been told all this, why haven't I been given more information on what to potentially/possibly expect & what to do if it happens? Considering it's such a serious condition, I just can't believe the lack of information or guidance from the so called medical professionals.
In a lot of cases they plain don't know. GPs may never have come across GCA before and a lot of rheumies only see patients occasionally while the GP deals with the day to day graft. Everyone here has walked the walk and worn the shoes. That's how we know.
Janeval, I can’t really add to the excellent advice and information you’ve been given here. I can only say that you’re not alone, I was diagnosed with GCA in June 2021 and given a fast taper by the rheumy. I got down to 17.5 within a couple of months but have struggled really since September 2021 when I was on 15 (I’m currently on 8mg).
Honestly do follow the advice to taper slowly. I agree with you that the info that lots of us are given is completely inadequate! I now give at least equal weight to the advice on here and it’s been my salvation.
So to summarise, never ignore symptoms, taper slowly, and I hope you get some rest and some help with your stress levels.
Advice from guidelines for a flare is to go back to previous dose you last felt ok - but that’s under medical supervision . In your scenario-maybe ring 111 but they may well tell you to go to A&E so probably best to cut out the middle man and go straight there. Hopefully it won’t come to that..and you get through weekend without issues. .
Late p.m. yesterday I started getting the odd pains in my head again, still got that sore prickly feeling on my scalp and the fatigue set in. So I rested, took paracetamol & put my feet up. Pains didn't go away & got a mild/mid headache in my forehead. Paracetamol didn't take the pain away although it wasn't bad-just 'there'. I went to bed early as it had improved but I felt really tired. No problems in the night & I'm fine again this morning. This has happened a few times in the last few weeks. Had blood tests yesterday so won't get results until Mon/Tues. I'm still on my 20mg Pred. Do I ring 111 for advice - I really don't want to be going & sitting in our local A & E at the w.e but what do I do? They were the ones who dismissed me last time I went before diagnosis& ignored my symptons so I don't feel very confident going there tbh! I presume this is what's called a 'flare'?? I always take my Pred with my breakfast in the morning- if I had to'up' the dose, when do I take it & can I take it any time of the day - with food?
As it seems to come on later in day, would day that may be as affect of Pred is beginning to wear off…so 20mg is not enough… Do you have enough to take an extra 5mg [which is recommended for flare] for the next few days until you get results of blood tests and can speak to your own doctor? You can take that extra at any time.
And if you’re only on them for less than 10-14 days no issue to drop back down to 20mg.
But I would be inclined to ring NHS 111 as well, and see what they suggest- if they dither, you could run my suggestion past them and see what the response is. But obviously if you get more serious effects you will need more medical advice..even if that means A&E. Hope not, but do let us know please.
Thank you so much for that. I've called 111 & am waiting for a Doc to call me back but yes, I do have enough Pred to take an extra 5 mg so I may do that if I don't get anywhere with him. I'll let you know what happens. It's very comforting to know that I can get answers & into through this forum. I wouldn't know half of it if it wasn't here!
When you explain the concerns about the symptoms don;t forget to tell them about being ignored and dismissed before diagnosis. It very much depends on the ED - in Yorkshire even the paramedics on the road are clued up on GCA symptoms and signs and the EDs have a protocol. Elsewhere - not so good.
111 called back & I've spoken to a Specialist Nurse. She was very knowledgeable about GCA as she's done studies on it. Told to up the dose to 25mg- as you did-& then see how I go. Hopefully get blood results on Mon. So we'll see what happens then. Thanks again, I'll let you know how I go.
Just to update you - I've been on the 25mg since last Saturday and seem to be ok now apart from the odd pain in my head but nothing more than a flash of pain (is this normal??). My bloods came back - completely normal, both well with 'normal' range now, but as you said, go by how I feel and not only on blood results. I see my Rheumatologist on Monday, so the Nurse who rang from the hospital said to stay on the 25mg until I see him. I suspect he will tell me to keep reducing at the fast rate I've been doing so far, but I'd really rather slow it down now as I just don't want to be going backwards again. Would you think I need to reduce to 22.5 or back to 20mg as I was before? I will have been on 20mg (3 weeks) & 25mg (1week) by the time I see him.
Hopefully he will realise the previous taper was too fast - and will slow it down..I would certainly be pushing for going to 22,5mg initially rather than straight down to 20mg…with maybe an extra week at 25mg [although that might be a bridge too far for him, but it worth suggesting].
At a research meeting with NICE a few months ago Prof Sarah Mackie said something about how rheumatologists would adjust the taper if the one they started with failed. I burst out laughing - she was horrified to discover that wasn't how many doctor went about things ...
Point out to him that it isn't slow if it works and avoids repeated returns to higher doses.
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