Hello recently diagnosed while working in China with GCA - they are doing other tests too - but I don't know what they are! I am feeling very rough and wondered if this is life now? feeling dizzy, shaky, woozy, with a numb and prickling face, no energy to do anything - or do things get better and I will be able to at least get about a bit? I am trying to contact health people in the UK to see if I can come back to deal with the balancing act of meds/disease. Anyone care to share their every day life activities? I am interested to hear how you get on day by day or if I need to just have this very limited life now. Thank you.
What will life be like?: Hello recently diagnosed... - PMRGCAuk
What will life be like?
Written by
GingerPoodle1
To view profiles and participate in discussions please or .
39 Replies
•
Oh no, sorry about this. You’ve come to the right place though! There’s a lot to tell but the first question has to be, have you been given steroids to combat the inflammation? This is essential and should not be delayed while other tests are carried out; all the guidelines say this. Usually 40mg Prednisolone is the starting dose for GCA.
This isn’t how it’ll always be, but the beginning can be quite stressful! When you feel able it would be really helpful to put in your bio how it all started, how diagnosis was made, how long ago, what dose if any you’ve been on.
I’m on 50mg of prednisone for two weeks.
PMRproAmbassador
Difficult to say more without the info SnazzyD mentions but once you are being treated with pred lots of things improve - although high doses of pred aren't pleasant either.
Once you feel able, tell us the story and what the doctors are doing. Do you live permanently in China or is a return to the UK a reasonable option? This isn't a short episode - and medication goes on for at least a couple of years, with the pred dose changing as you taper the dose. There is a biologic injection that is very effective but it does mean you need a specialist to prescribe it and monitor you.
However, once you have things better under control, it won't stop you doing things though you may have to take is easier than you have in the past.
Hello I’m on 50mg of prednisone. It’s tough here as the condition is even rarer in Asia. The translation is difficult and resulted in an inadvertent accidental overdose of meds on the first day. I’ve had mri, mra , colour Doppler and just out of another full body mri thing. I told them I dont want radiation but I think the gave me a contrast dye of some description. This was ordered by a rheumatologist but you feel so powerless as communication is so hard. My employer says they’ll support me having sick leave in the UK but I can’t get hold of the doctor. Thanks for the reply! It’s lonely out here!
What - not even x-rays? Radiation isn't needed for management but PET-CT uses labelled glucose as a marker for inflammation and is very useful in PMR and GCA.
What happened with the accidental overdose? 50mg is a fairly usual starting dose - but it is pretty much impossible to overdose on pred since one approach to GCA is a 3-day pulse therapy right at the start which is 1000mg per day as an infusion. Daily doses of up to 100mg pred are also sometimes used at the outset - but don't worry, not for long.
There must be doctors at the hospital who speak English, at least, are able to read it. This paper may help, though you won't be able to read it - it recently disappeared behind a paywall after being available to us for year free! Several others have also gone the same way which is very frustrating.
pubmed.ncbi.nlm.nih.gov/232...
However, having said that - I have just discovered that I can see it via this link
academia.edu/105284493/Our_...
You then have to sign up to Academia - which is free for the basic service and may allow access to other papers so hey ho, worth a try!!!!! It is a clear and reasonably simple paper about managing PMR and GCA which we have found very useful in the past. The author Professor Vanessa Quick is now a specialist in GCA at the Luton and Dunstable hospital near London.
However, there is now an alternative to pred, or at least, a biologic drug which reliably allows you to taper off pred much more quickly. It is called tocilizumab, an IL-6 inhibitor, marketed as Actemra and it stops the main cause of the inflammation so you are able to get to a much lower dose of pred within months. It isn't used on its own, pred is known to work so is always used together with tocilizumab. In the UK it is limited to one year but in other countries it is available without limits - so may be available in China.
Being nosey now - who do you work for?
Hello! They’re being cautious with radiation as I have had so many x rays for other ailments these past few years. The overdose was because I was told to take a larger dose than prescribed but all was OK just means I lost confidence in what I am told. I am also on DOACs and they thought the overdose may cause a stomach bleed. Luckily it didn’t! I’m a member of Academia so will check out those papers. Didn’t think of using it for my own medical research! Good advice. I work for a UK university out here - design and innovation fields.
a very quick reply. Nothing you have described, mri, doppler uses any radiation.
My son was studying in China some years ago and had a very serious accident and the insurance flew me out to be with him. Our experience was that if you were in a major city and of course getting private treatment, the healthcare was excellent. and the senior doctors spoke English and were reading all the latest medical paublications. But you do need to be in a major city (which you must be if are getting mri and doppler...
The medical care was excellent and it sounds like you are in good hands...though a really scary experience.
sending you every good wish.
Yes I am in a small city but there are some specialists come down from Shanghai. China is very developed for healthcare. I have deliberately avoided radiation imaging for the reasons above - luckily its not needed (or hasn't been so far). In a way, I feel that the diagnosis has been much quicker here due to the expertise of Chinese medics but they are concerned that the ongoing care will be difficult. A bit scary indeed - especially as I am still waiting for the UK doctor. If only I could speak better Chinese!
The healthcare my son received in China was better than he got when he was back in the UK! But we were in Tianjin. This forum will provide you with lots of important info. Don't be surprised if your UK doctor isn't as well informed as you are (after reading all the info here) Zhù nǐ hǎo yùn
I'll back what agingfeminist says - I am reluctant to return to the UK from northern Italy because the care there at present is far from ideal. First, see a doctor. And that can take weeks even for a GP in places, who probably wouldn't recognise GCA, and the wait for a specialist in some places is even longer. None of it is time you really have to wait if it is GCA.
The larger dose than prescribed may well have done you a good turn and ongoing you will take a lot of pred over time and the DOAC won't change - I'm on one too. my cumulative dose is well north of 40g I think, I lost count long ago, and as yet, no problem.
Personally I wouldn't be concerned about radiation dose due to x-rays - it is miniscule compared to the dose that needs to be administered at one time to cause illness. Here are a few factoids about radiation ...
A return transatlantic flight exposes us to around 0.1 mSv (equivalent to five chest X-rays)
We absorb around 2.2 mSv annually from natural background radiation (equivalent to 110 chest X-rays)
Radiographers are legally exposed to up to 20 mSv a year
It takes approximately 1000 mSv to induce acute radiation sickness
Thank you - this is so helpful and informative. I appreciate you taking the time. x
As well as this group there is helpful general information in the information packs from the same charity pmrgca.org.uk/ which my GP recommended I download at the start. I only have PMR not GCA (so far) but for me taking prednisolone has meant I an nearly back to normal, just easily exhausted and needing to take care not to overdo things. I retired 2 months after my diagnosis though (already planned not because of it) and now just work odd days so its easier to rest if I need to.
One of my children used to work in China years ago and I remember how stressful it was when he got ill there, his Chinese was pretty good but medical terminology was another thing altogether. He did find a doctor who spoke English in the end, and was impressed with his treatment. Or can you ask someone to come with you to translate?
Hello thanks for the reply. I find the medical provision here first rate - very advanced but the medics say it’s the management of the condition that will be difficult as there are not many folks with it here and communication is tough and stressful.
Hi and I’m sorry you’re in such a difficult situation.
To answer your question, so long as you are receiving treatment (which you are). …no, you should not always feel this bad. Your symptoms are almost certainly a mixture of the disease itself; the shock and stress; and the 50mg of prednisolone, which takes some getting used to.
Once you’re on an effective dose, whether of prednisolone or that plus toczilimab, you will after a few weeks or months be advised to gradually reduce the dose. It’s important that you don’t do this until advised.
But then you should start to feel much better. No one can put a specific time scale on it, but you should definitely be able to get around a bit, as you put it. You will probably need more rest, but that’s for the future.
For now, please be assured that this is a serious condition, but one that is amenable to treatment. You will have access to amazing support on here too!
Do keep in touch..All the best to you xx
That is very reassuring. Thank you
DorsetLadyPMRGCAuk volunteer
Hi nd welcome - sorry to hear about your GCA - but there is life with it and after it- I’ve just arrived in NZ for my 3rd trip [from UK] - one with the disease, two after it.
Won’t give chapter and verse of mine as am on holidays, but you can see my bio if you’re interested.
Do have a look at the FAQs, plenty of info there - and with others comments - but maybe start with this introductory post - lots of info in it, so perhaps keep to hand so you can re-read when you have your head round things -
healthunlocked.com/pmrgcauk...
Hello there and thank you for the tips, I will look through all of these. xxx
Another non-specialist voice to echo what NextOnePlease said. Once you are sorted with the Prednisolone or similar, your symptoms will subside and you will be able to live an almost normal life, provided the waters aren’t muddied by other ailments. You have an anti inflammatory disease which will take two years or more to cure itself. In the meantime the steroids will manage the symptoms but not the cause. Steroids come with side effects but are the most efficient treatments and you will find comprehensive discussions on this forum.
Watch your diet! Cut down on the carbs, gradually try to introduce fermented products such as kimchi and kefir. You need lots of dairy products to protect your bones from the steroids, and make the most of the opportunities in the land of green tea.
I suspect you will find the language barrier is no worse than our lack-of-knowledge and stick-to-the-rules barriers, not to mention NHS queues.
After my first year, I am down to 4.5mg of Prednisolone and staying there voluntarily until after Christmas although my body tells me I could go lower. I suffer from fatigue and a bit of brain fog, but am still working part time and enjoying a good life.
Accept that you have this thing now, and the underlying cause was your lifestyle (food, drink, partying, stress, exercise etc). Take it slowly and let your body heal itself, whilst keeping an eagle eye on those drugs and potential side effects.
And please, take us along on your journey.
Thank you Chris - I am going on a life style change to wellbeing now (perhaps a bit late) but it is necessary!
So sorry to hear of your diagnosis,scary to say the least.All I can add is that do not be in any rush to get of the Pred.I am 2 years in with my GCA and still on 5 and1/2 mg tapering to 5 mg..I had 2 flares because I was pushed by Drs here to taper too quickly..I felt wonderful when things settled down,the Pred gives you a sense of well-being on high doses but as you come down to lower doses you will realise that you CANNOT do what you used to do.Fatigue sets in if you do too much,I still do lots of things but acceptance that my body won’t let me do too much without complaining is my wake up call.You will feel a lot better in time,hang onto that thought,but life must become more leisurely and your body will keep reminding you of that.Wishing you a speedy recovery,keep close to the forum,as I have said countless times on here to people,you will NEVER be alone with this goddam disease,there is always somebody on here to give you expert advice,,a sympathetic ear and Lucy your spirits if you are down in the dumps with it all.It can be a rollercoaster at times,but let us share this ride with you,as we are all on it,Sending you a comforting hug,,xxx💐💐😜
Well done for finding this site so early as it will help you a lot in understanding how you are feeling. I reckon you are in a good place in terms of medical expertise. Is there no one at your university that could help you with translation ? Or a student that could help, although I appreciate that is quite intrusive for you.
Dont over do it after the high doses of prednisolone, I did as I felt super human and then could hardly walk for 5 months as I messed up my muscles big time.
Are you waiting for a UK doctor to call you, or you want to come back to see one?
ChrisBeeLoop has mentioned cutting down on carbs, not so sure how easy that is in China, but good advice as some on here have developed steroid induced diabetes which you don't want on top of everything else. You also need to protect your stomach and bones, so make sure you eat well before taking the pred and up your dairy, which might be tricky in China, so perhaps calcium supplements, Vitamin D and K2 to protect your bones.
lots of things will start coming to you in the next few days and weeks so keep asking. Don't be surprised if you don't sleep that well on the high doses ( I had the 3 day pulse therapy that PMRPro mentioned at 1000mg per day) but things will settle down, it just feels all consuming right now and all you can think about.
write things down in a book as you may well forget as there is so much going on. It is a good reference point as time goes on. And breathe.....
Thank you Sophiestree - I am watching the diet, I am not great on dairy but have moved to vegetarian rather than vegan diet (I have been very undernourished in China). and will certainly be bringing lots of green tea back! I have also started your advice and begun to write a journal.
Sorry to hear of your diagnosis but it is good that you have the dx and the steroids. My journey started on 60mg of steroids and I thought the world had come to an end for a few weeks. It does get better once you are able to reduce the steroids. I found that knowing the side effects of the drug was somewhat consoling but that could just be me. This forum saved my sanity and highlighted that patience is needed - this is a marathon not a sprint. Just keep reading up about it as much as you can. I think I would need confirmation that it was safe to fly anywhere with GCA although coming home may seem a great idea it might not be possible? You are not alone - so take care.
Thanks Pippah, I have just heard that I don't have PMR or systemic vasculitis so I can now start to make a move homeward - at least I think I am!
That sounds like very good news - I hope all goes well.
The management isn’t difficult if your doctors allow you to go at your own pace based on your symtpoms and not blood tests. (In the US they try to push you way too quickly and object if your symptoms last beyond a year. ) You basically reduce by a certain amount every 4 weeks or so unless symtpoms start to return. I am not versed in GCA reductions but honestly those who are happiest seem to be given plenty of prednisone and are permitted to direct their own taper. I am sure one of the members here can point you to a recommended starting point for a GCA taper.
I have linked to Prof Vanessa Quick's paper on tapers for PMR and GCA - she is a GCA specialist at Luton&Dunstable Hospital and still uses it.
Hello there, yes they just mentioned that I can begin to look into tapering from the end of the month - but the only English speaking doctor for miles is going back to Cameroon so I am bereft of tapering advice in person - so the recommendations here will be necessary! I will continue to seek support from home. Thanks!
Hi Ginger! Sorry to hear that you have GCA. I was diagnosed with it 2 years ago with the onset of vision changes in my left eye. Lost most of my vision in it unfortunately . With being put on high doses of prednisone and later Actemra I’m doing well. Still get tired but am living a full life and feel blessed! I’m off Prednisone and take Actemra injection 2 x’s a month. Life will get better!
Hello there LRevell and thanks so much for the reassurance! I hope you continue to thrive!
Hi GingerPoodle1
You are feeling pretty rotten now but things do get better, I was diagnosed with GCA and PMR in January of this year, 2024, and was feeling really poorly. I was put on 60mg prednisolone straight away and symtons eased within days, I was on a high dose for quite a while and the dosage lessened as the months went on. I am now on 10 mg daily and weekly methotrexate injections.
Feeling much better now, my consultant said treatment lasts for two years, so have another year of it yet and in the process of dropping down 1mg a month over the nest few months but hoping I will feel even better this time next year. I have extreme tiredness at times and sometimes feeling sickly and 'just off' but so much better when i think back to twelve months ago.
So take heart and stay positive, take your meds and tell your doctor how you're feeling, listen to your body and rest when you need to. I hope you start to feel better soon. Best wishes x
"my consultant said treatment lasts for two years"
His treatment may be programmed to last 2 years - but PMR and GCA last as long as they want to take. So if symptoms return at lower doses of pred don't ignore them and don't allow yourself to be fobbed off.
Thank you so much, I must say the more I go on this site the better I feel as I have felt alone and down at times this past year. I thought two years and this illness will be gone as long as I take the meds prescribed, and as my consultant said at the beginning of my diagnosis back in January. I haven't seen her for a few months but can ring my rheumatology department and speak to specialist nurse, and am due to see consultant in February. Thanks also your advice about not being fobbed off as I do tend to let people do that with me, I'm now 70 and still like that!
I see it less now, but when I first started on the forums, some 16 years ago now, a lot of patients who found the forums did so after being promised they would be recoved in 2 years and then experienced doctors bullying them to get off pred or insinuating they weren't trying hard enough! So they felt failures and were very upset, sometimes in despair.
I already knew then that PMR didn't last 2 years and POOF, it vanished into the ether - I'd already had it for 5 years without pred and there had never been any sign of it going away on its own. And pred has no curative action so that wasn't a factor. So I made it my business to read everything I could lay my hands on about it - and I was lucky enough to meet Profs Sarah Mackie and Baskhar Dasgupta through the lady who set up the NE of England charity and was a driving force behind the national PMRGCAUK charity. Much has changed in that 16 years - but not all the doctors who still believe the 2 year myth! Still far too many of those!!
Thanks so much this is reassuring - I have some very strange blood results too now (including one that can indicate pancreatic cancer) and so I am very keen to get back where at least I may be able to speak the same language, though lots of people have told me not to expect much in the UK.
If you are relying on google - it ALWAYS gives you the worst case scenario! And they are right - the NHS is in a parlous state I fear.
Thanks so much for this reply. I really appreciate it. x
Hello. Sorry to hear about your diagnosis and how you're feeling. I think a lot could depend on the medical response to your condition. I was diagnosed with GCA in Feb this year. I ended up being hospitalised and was diagnosed in hospital after about 2 weeks of various tests. I was lacking energy and getting frequent head / upper body aches needing regular painkillers. As soon as the diagnosis was made I was given steroids, which almost straightaway got rid of the pain. I came home and - after a recovery period - went back to work. However, as the steroid doses were reduced, I started to feel extremely fatigued again and ended up having to go off sick again in early July. I'm still off sick and my employer's Occupational Health doctor wants me to wait till the steroids are ended before reviewing for potential return - probably looking at late Jan 2025 to end steroids after gradual taper down. I suspect that part of the problem is the withdrawal from the initially high doses of steroids. However, I'm not complaining about the steroids as they massively helped! But the medics don't want to keep people on steroids (for good reason). I also have a Tocilizumab injection every 10 days.
Fatigue has been an ongoing issue - feeling like low stamina / battery - so I've had to adjust accordingly. But I still get times when I have energy and can do things like go for a run etc.
At the moment, I don't really know how I'll be when I come off the steroids. I think I've learnt not to think too far in advance and just see what happens and then try to deal with it accordingly. I'm fortunate to have contact with a good Rheumatology Consultant and team and an understanding and supportive employer.
Good luck and all the best wishes for you.
Thanks for your reply. It’s really helpful.
Not what you're looking for?
You may also like...
What success looks like!
Hi everyone,
A couple of people have suggested that we show you the extent of the activity on the...
giant cell arteritis, depserate for info to save my life
I am 42 yr old, living in toronto who is desperate to get info so I can get diagnosed. I have had...
My Post will be Thankful
I don't post very often, as you know. But I would like to say when I was down a few weeks ago, I...
What are GCA headaches like?
Trying to get a diagnosis of something. Perhaps GCA? or TMJ? When you have headaches with GCA do...
What else could it be
I am back again, still on 2.5 mg predict but have to increase it to 5 again . I get that it's...
Related Posts
Will I be at this dose for ever?
Fatigue is controlling my life
Feels like life is falling apart
Will I ever be off pred with GCA?Moderation team
SophieMBPartner
Fran_BensonPartner
