Hello my gp is fairly convinced I have GC and has referred me urgently to opthalmology. Been a few days and not heard anything. She started me on 40mg of prednisone.. its been difficult sleeping and I've had night sweating . Pains in my eyes are still there and dull headache sensation.
How long did prednisone take to work for you.
Hi and welcome,
If you still have headaches and eye issues then you need to see a consultant asap.. as 40mg may not be high enough. GCA should be treated as an emergency - unfortunately ‘urgent’ doesn’t seem to be that nowadays..
As for how long it will take to get relief, that’s a very individual thing.. there isn’t a set period. But what do you mean by ‘a few days’ - I think you would expect significant improvement within a week.
Unfortunately sleep disturbance is a common side effect of Pred, especially at higher doses, but that should improve as your body gets used to,the drug and as yiu reduce. Sweating may by a side effect, but is can also be part and parcel of the disease itself.
Maybe have a look at this introductory post - and it might be wise to speak to your GP again and push her to hasten your ophthalmology appointment.
healthunlocked.com/pmrgcauk...
Thank you so much for this reply. That's so kind. The gp had sent to contact her if I've not heard in a few days so I will do that tomorrow. Yes its difficult when they say urgent and ive not heard anything.
It's day 3 for me on pred so it is a few days but my eye aches and headache although duller are still there. I will monitor this week .
Just out of interest do you know higher than normal haemoglobin is linked as I've had my blood test back which is the first time its been out the normal range and my crp and esr are all normal ?
I'll have a look at that link now. Thanks, lovely .
Okay and please speak to GP tomorrow.. and impress upon her that although things have lessened a little you are concerned they are still present.
Higher than normal haemoglobin is sometimes present in GCA [PMRpro can explain better than me] - and well done on GP not being sidetracked because CRP/ESR are normal.
Please keep us informed, and any question comments just contact, there’s always someone around to help…
No - lower Hb is common as part of the anaemic of chronic disease/ Unusual to see raised Hb,
Found this which I think is useful - and up to date:
emedicine.medscape.com/arti...
Thank you so much. This is an amazing resource ..I shall have a thorough read now. It looks like my bloods are not the usual for GC !
UP to 1 in 5 have GCA or PMR without raised inflammatory markers - or they are raised for THEM but still "within normal range". "Normal range" is the range of levels seen in a large population (10,000 nominally healthy persons are often required to establish a normal range) that covers 95% of the results. There are always 2,5% at either end of the bell-shaped curve who are outside that range but not sick. And you can be within that range - but be sick. My personal normal ESR is in low single figures, so when it is at the upper end of the normal range, it is very raised for me but a lot of doctors discount it,
Thanks - apologies -thought I’d read opposite somewhere
You may have - but I haven't ever seen it. I did look - and to be fair, a rheumy well known to us found that seeing an Hba1c that was raised into diabetic range made a diagnosis of GCA LESS likely. But I don't think there is a link with Hb.
pmc.ncbi.nlm.nih.gov/articl...
Ah.. that's what I'd seen.. didn't read it properly... 😒
Thank you .. brilliant to have found such knowledgeable people xI will contact and keep you informed . Gp actually said they may not be elevated as she's seen that before . She seems to think a biopsy is needed although from what I'm reading once pred is started they can be not very informative 🤔
They aren’t always that accurate anyway…. the GCA affected cells aren’t spread evenly throughout the temporal artery, or even all arteries. So the sample taken from the artery may not show any GCA, but that doesn’t mean somewhere else in the artery isn’t affected..
If you get a positive result then fair dos, but some get a negative result when they do actually have GCA.
Interesting figures in the article I linked for you.
Yes there are...
It sounds a nightmare to diagnose . Hope i don't have to have a biopsy tbh. 
Morning D,not always a biopsy ,I had a TAUS( temporal arterial ultra sound) which confirmed mine.Painless.Good luck to you and hope you get some answers soon.xx💐
MorningOh that's great to know. I'll cross everything they can do that . Thanks so much for the info. I'm being referred to opthalmology so hopefully they can do that xx
I hope yoit treatment is going well A xx
Not sure if ophthalmology would do this but I am pretty sure that somebody might come along and verify this.Mine was done in rheumatology.Yes,I am doing ok,like DL ,I lost sight in one eye through not being diagnosed but we accept it and get on with life.Had 3 flares but so have many people.part and parcel of these diseases I guess.Starting a nice slow taper AGAIN!😂Very lucky regarding eye checks.My hospital send for me every 4 months or so for scans etc and to check pressures and keep a check on my MD in good eye.New Rheumy seems very accommodating ,going along with what DL suggested.My very best wishes to you Dee let us know how you get on eh?xx💐💐😜
Thanks so much and so glad you are being checked regularly and having good care .I think my GP was debating whether to refer to opthalmology or rheumatologist amd decided on the former . I hope I can ask for a scan .
I will let you know as soon as my urgent referral is acted upon!
What a strange week its been !
Sending gentle and positive hugs to you xx
Many thanks to you.xx💐😜
She maybe thought the waits for opthalmology might be shorter but in the UK it is very unusual for them to manage GCA longterm - and it is rheumatology who set up fast-track clinics. I think most people who end up under opthalmology do so because their first presenting symptom (what sends them to the doctor) is sight loss.
I thought it would be neurology tbh so both opthalmology and rheumatologist seem an unexpected pathway . I didn't have sight loss but she was the most worried about my vision . Thanks again fir the info x
It is traditional I think as, apart from sight loss, the early symptoms tend to be rheumatological in nature, leading to a PMR picture. It is also an autoimmune/autoinflammatory condition causing vasculitis (inflamed arteries) and rheumies claim to be the experts there!
Aww I see .. I don't have any rheumatologist symptoms ,just sudden daily headaches and eye pain and tenderness in parts of the scalp. Do you think I should be seen by rheumatologist? I've just called the gps and they are going to chase it up today. Hopefully I will hear something soon .
Thanks so much for this wonderful support and I hope you are doing well on your treatment plan xx
The top GCA people in the UK are rheumies. Where are you (-ish, not your address!!)?
I'm on the wirral peninsular in west kirby. I wonder if theres anyone who specialises in it here ? The nearest city is Liverpool and Manchester. X
Unfortunately that area has - surprisingly - been something of a desert for years when it comes to PMR/GCA. There was a ray of light when someone tried to start a NW charity but it fizzled out.
You could put up a new post asking if anyone could recommend a good rheumy department or their experiences - did the GP say which hospital she was referring to?
Yes arrowe park ,which is the local hospital. Oh I will try that now. I suppose the London hospitals have the top people?
Indeed not - unless you count Luton and Dunstable as London (I don't). Prof Vanessa Quick is there - and a trustee of the forum, Prof Sarah Mackie is in Leeds. Our favourite go-to for people struggling with the NHS and seeking a private option is Prof Rod Hughes in Chertsey. One very knowledgeable GCA specialist is in Norfolk - but his patient-skills are a bit hard and he is convinced GCA and PMR only last 2 years. There are other good ones around the country, but it is a bit luck of the draw as a lot of rheumies can't see past inflammatory arthritis and you can't manage PMR'GCA the same way. It is a bit SE-centric though I suppose - but then, lots of people and hospitals there ...
Thanks again for this information. It maybe I have to travel but I'll see what they say at the local appointment first. Good to have some options .x
The only one of that lot who does private work is Rod Hughes. Most of the top people are too busy doing research ...
Thanks lovely I'm just googling him now . Thanks again for all this engagement. What a wonderful forum this is x
finder.bupa.co.uk/Consultan...
Jody his secretary will give you the low down! We keep getting varying contact details but if you ask on the forum, there are several who see him.
I suppose the London hospitals have the top people?
Not necessarily 😊
I imagine the ophthalmologist will suggest that if he confirms it's GCA.. I was diagnosed and initially treated by Ophthalmology - but after a few months when they were happy with sight issues [long story - see my profile] - I was referred back to GP and it was suggested I be referred to rheumatology - but that's another story.
Hello Dee, I had a Doppler ultra sound of my temporal arteries and branches of large aorta to diagnose GCA/LVV - painless and results were immediately available and discussed with rheumatologist. Good luck ….
Suspicion of GCA is a medical emergency - like a heart attack or stroke so to be waiting more than 48 hours is not acceptable. The longer you are on high dose pred the more difficult it is for the doctors to assess the possibility it really is GCA. It is also no ususally the ophthalmologists who deal with GCA but rheumatologists, especially in the UK. I'm a bit concerned your GP is not as well up in GCA procedures as she should be so do push a bit.
Otherwise, DL has covered everything I'd say.
Just a quick update . I've got an appointment for Thursday 20th with rheumatology . I'm not sure that's classed as urgent but that's what the gp asked for. Apparently she's referred me to opthalmology as well but I haven't heard from them ? I don't know if they've jist passed me to rheumatology?
Maybe .. at least you now have a date...
Yes that's what I thought. Thanks again lovely for all the engagement x
Very possibly as all referrals are triaged and rejected when not appropriate or send to who it should be if it is required. Urgent in hospital parlance usually means "sooner than routine" - if it should be "now" the word should be "emergency" - OTOH, if it is an emergecy, that is what the ED is for. My daughter is in the ED, in her hospital they can start the protocol but if enough red flags crop up, they send the patient to the Big Hospital which is a major trauma unit and has all the facilities for assessment.
Yes its a bit of a lottery isn't it ? I suppose they've started me on the pred, so that should give me some protection until.i see them . Although it will now be harder to confirm if GP is correct ? Any tips on sleeping with taking pred ? I was awake 3 and half hours last night ! Exhausted today!
Gp has given me 50 mg (I had misread as 40 !) So just taken 10 tablets .
This re sleep - but really early days its just a matter of catch up during the day as and when you can.
If it is an consolation, I frequently spend 3 or 4 hours wide awake at night and I'm not on that sort of dose of pred, a mere 7mg here! It happened long before pred was introduced so I think the disease itself has some effect. As DL says, acceptance and sleeping any time you feel you could is the main answer. If you have GCA, you have a serious systemic illness and you really are ill even if it doesn't look like it! Behaving ike a poorly person and lots of TLC are the order of the day.
In 10 days of high dose pred a lot will have faded but there should be some identifiable left-overs if the hospital does the ultrasound. But on the whole, GCA is a clinical diagnosis, backed by the response to pred.
Oh bless you .. lack of sleep really is debilitating xThanks ,I definitely feel the need to TLC. What a crazy week it's been so far !
Oh that's good to know .. I suppose after 10 days I shouldn't feel any pains if it is working and I have GC and if I still have pain then maybe a rethink is in order ?
Hi. Apologies for butting in. Given where you live I’d be contemplating not waiting a further week for an appointment but going to St Paul’s eye hospital in Liverpool which has a walk-in emergency clinic every day till 8 pm. It’s right beside A& E at the Royal Liverpool, or it was - the new hospital has opened now. No referral needed. Explain very concerned as sGP suspects GCA. and think it’s too long to wait fo your appointment. They’ll see you and give you an eye exam, plus scans if required. St Paul’s is a leading eye hospital with some of the best ophthalmologists in the UK.
Oh Diver thank you so much . That's so kind and such great information. I will definitely try that and see what they say . I can only try xx
uhliverpool.nhs.uk/services...
The address on this info is the old address. The new hospital is on Mount Vernon Street. IThe phone number is the same though, I believe.
Fantastic thanks so much. I'm on my way there now . See whay they say. Hopefully they will scan me or do what they need to do xThanks so much for the info x
Hope you are doing ok x
Great. Make sure reception staff understand that waiting for a routine opthalmologyvappointment is risky when GP suspects GCA ( which reception staff may never have heard of) because of potential for sudden sight loss. Good luck.
Thank you so much Diver for the advice today. I went to St Paul's and they were just excellent . Did all the scans and tests and through examination within 3 hours. Ive got to go back Monday morning for a field view test as my eyes had already been dilated and they've referred me to neuro optomaolgy for a review ,but that will be in a few weeks . She said to go to rheumatology on Thursday and they may suggest the biopsy . But in her opinion she doesn't think it's GCA because it so rare that my headaches are bilateral ? I saw a few doctors and they were saying that because my bloods are normal esr and crp it's unlike to be GCA from an optholamogy point of veiw . Although my gp has said some people have raised bloods and some people don't.
Anyway I would never have thought if going without your input ,so thank you !
Wishing you well and ull see what next week brings for me x
Glad that it worked out for you. I think they are excellent. They dealt with a serious eye problem I had a few years ago unrelated to GCA and I had an excellent result. I now no longer live in Liverpool and wish my local services were even a quarter as good as they are. Instead they are chaotic and hopeless. Sounds like you can be reasonably reassured and if your field of view test is ok you’ll know whatever is going on it hasn’t affected your vision. If hey had seen any overt ischaemia to your optic nerve today they’d have told you and no doubt you’d be on treatment now. You can rest a bit easier whilst you wait for the next appointments. Just a thought. Maybe tell you GP when the time is right what you did so she thinks of the option for the next patient she may see. Presumably she’ll get a letter anyway from St Paul’s.
I totally agree .. its such a wonderful hospital. Ive never had as good an experience anywhere! Thank you ! Yes she is just sending me for a review because my cornea was slightly thinner and I have a family history of glaucoma so being extra vigilant .
I will definitely report back to my GP the amazing experience I've had.
I'm so sorry your local services aren't as good ! Our local hospital had refused my opthalmology referral because my bloods were normal, and I wasn't reporting vision problems. They've left it up to rheumatology.
It is a lottery the nhs isn't it ?
Best wishes and thanks so much x
Unfortunately yes. What I would say is that St Paul’s is absolutely inundated,and always has been. Shows that standards don’t have to slip because of demand pressures. Too many services hide behind demand presssures to excuse their poor attitudes to quality and performance. I’d better stop there!
But in her opinion she doesn't think it's GCA because it so rare that my headaches are bilateral ?
What? headaches can be all over head ..see this from NICE CKS
New-onset headache:
Headache is the most common symptom (occurring in about two thirds of people with GCA) but may not always be present.
The headache is usually temporal but location may vary (for example the person may present with more generalized, occipital, or parietal pain).
Yes she said it was so rare like one in a billion, to be both temples ? But if it can go all over the head why can't it be in both temples ? Erm food for thought 🤔 Really glad I went though x
Not sure that one in a billion is a real figure - GCA is a rare disease, at that rate it wouldn't be seen I suspect. When dual biopsies are done, they can both be positive but doing two doesn't improve the diagnostic rate - but that doesn't mean it doesn't affect both sides. She may not have see it - that's another matter entirely since by no means all GCA patients are seen in a specialist ophthalmology hospital.
Thanks PMRpro.. I think she was trying to emphasise it would be more unusual presentation and for her made it less likely alongside the blood results. It's a mine field of info isn't it ,for any diagnosis ? Definitely not straightforward . I understand what you are saying though . I think I will have to wait and see what the rheumatologist says and also how effective the pred is ,which at the moment are not noticeably reducing my head pain. Yesterday the whole team I saw were emphasising my negative blood results as a strong indication its unlikely ,even though I told them my gp said she had seen.cases where that wasn't the case!.
Blood test results are not the be all and end all that some doctors seem to think - they are only part of the whole jigsaw - but it’s the one thing that seems to cause an issues with many…
as we say time and time again…symptoms, symptoms, symptoms - with corroboration of bloods [or not
This isn’t a discussion about medical knowledge and the comment is dismissive. and disrespectful. It’s a discussion about how that is used by practitioners in contradictory ways and discounts evidence that they don’t want to acknowledge to silence the reasonable questions of patients who inevitably become clued up on their diagnosed conditions. and cause confusion and uncertainty. The bottom line in this discussion, which is where I started is that there is evidence that says not all presentations of GCA are accompanied by raised inflammatory markers. You yourself say the same and have quoted the evidence. So my question hasn’t been answered as to why that evidence is discarded by some practitioners, and not others, thereby confusing patients You yourself have effectively said the same, henc3 your helpful adice to questions. And as you yourself say too smptoms are an important part of evaluation, so again, why are they disregarded by some practitioners in favour of the sole criterion of markers. And against professional guidance about best practice.
Since you ask, I’m not going to detail my extensive experience and knowledge. Nor do I ask anyone else to do that. It’s not a competition. Rest assured I have knowledge, including medical knowledge, but I also have other knowledge too and experience of how systems and individuals within them work and operate. I’ve also won a national award with my team which included doctors for the innovative work we did to change a model of intervention that was adopted nationwide, is still in place though with a number of iterations as knowledge and experience was gained.
In that case - you must also appreciate that these are problems that lie with the doctors concerned and not with us as patients and since everyone here is here as a patient and not an NHS professional at any level, we aren't really in a position to do much about it. Prof Dasgupta and Prof Christian Dejaco and others are undertaking a Delphi study for their proposals to extend the classification of the currently separately considered GCA, LVV, PMR and Takayasu's arteritis to become a spectrum of disease. Japanese doctors who have a lot to do with TA have agreed with him that this all fits together. The early stages of the Delphi study are promising that this will achieve consensus which is an essential start - but how that will then affect NHS practice remains to be seen. The talk Prof Dasgupta gave yesterday pretty much covered all your complaints - but it is then a matter of education to spread the word. I know, I tell people on here, but there are only a few medics who hang around here. And what doctor will happily accept knowledge gained from a social media forum found via google? Even if it comes from a charity? We don't have the same profile as DiabetesUK, CancerUK, LupusUK or VasculitisUK because we don't have the level of finance they do,
I live in Italy, Christian Dejaco is my rheumy, my GP is rheumy trained, I have far fewer problems here than many patients in the UK. Perhaps the NHS basked for too long in the assertion it is the best in the world? You should know better than even I with an entire family working in the NHS that it is in a pretty parlous state.
So my question hasn’t been answered as to why that evidence is discarded by some practitioners, and not others, thereby confusing patients
Unfortunately neither I not most on here can answer that question.. we are patients, not medical practitioners- so your question needs to be directed elsewhere. Even asking the charity’s staff won’t give you the answer.
I wasn’t being dismissive nor disrespectful- just ask a question to ascertain what, if any, medical knowledge you had. If you’ve been on this forum for any length of time, you’ll know that’s not my style. Best leave it there.
Perhaps you would like to address that to Prof Sarah Mackie who was the person who told me. And perhaps develop legislation to force doctors to do what it says? Good luck to you!!!
I said it was WRITTEN by 3rd parties, professional writers of the sort who produce a lot of medical information leaflets. I have participated in NICE processes - you learn a LOT about their views..
It’s not my intention to be confrontational. In the right forum I’m quite prepared to say what I said. And then hopefully we can have an agreeable conversation. I’m confident that what I’ve written about NICE is correct and that what you wrote about what you were told is not correct. I do understand you were relating what you have been told so you were expressing another’s opinion. I did say that the guidance published by NICE is not directly written by them , but it is commissioned and funded by them from expert panels. NICE itself consists of medical experts and academics. It is rigorously checked for the underpinning evidence. It is central to providing guidance on best practice in health carehealthcare in the UK, and it has statutory standing. TheNHS generally understands its role even if some within it don’t t want to. All those are incontrovertible facts which are publicly available to check . I would say the same to Prof Quick. I’ve never met a doctor, and though I’m not going to relate the details of my career, I have met, discussed , worked with, and practised, and been treated by, many., who have never ever suggested that NICE had little standing. Quite the reverse.
The issue for me, and always was in my own career working across health and social care, is that both, and the practitioners within them, need to do a lot better on understanding how their practice impacts patients. There are copious comments here and on other forums of patients left confused and uncertain by the contradictory and idiosyncratic advice and instructions of their doctors, and is in fact why this forum exists and your and others advice is helpful. . Why should this not be put on the table? Since you mention her, I have been contemplating asking to be referred for a second opinion to Prof Quick, so if I go ahead would be delighted to raise the issue that I started this conversation with. My evidence at the ready!
The point is all possible symptoms are listed - but not all patients suffer from all of them… that what throws some doctors. They think you need to show signs of every symptom otherwise you cannot possibly have GCA or PMR - that’s not correct..
Yes. We are not textbooks. In my case I had ( now I’ve had time in retrospect to put things together) a range of symptoms but they didn’t present in the way the textbook s describe. in particular eating and swallowing claudication, brought on only by eating, disappeared immediately after eating.
i had a range of systemic problems. Also high inflammatory markers ( way beyond normal limits) but ( and this is ironic) told that these did not signify GCA or anything else to be concerned about.. And now I have normal markers these too signify nothing to be concerned about.
I find it difficult to compute a mind that thinks only along tramlines.
Join the clan in bring frustrated - but you are preaching to the converted on here
Fantastic article thanks DL. I'll try all of this tonight. I have some sleep aids OTC but wasn't sure if I should take them with pred ? I will ask the gp x
Take them or at least check with your GP! I never did take anything and struggled for 3 months before I saw the GP. I was on 20mg at that point and sleep was terrible. I was literally on my knees with exhaustion and anxiety. On 6.5mg pred at present and it’s better. I’m tapering off Mirtazapine now which I was eventually prescribed. I found it helpful to aid sleep.
Bless you and thanks for the reply. Sleep deprivation makes you feel so ill . I cant focus. You can't recover if you are exhausted. Hope your tapering goes well lovely x
Sleep deprivation is horrendous. I recall on high doses just managing an hour or so then being jolted awake by the pred alarm! Torture. Look after yourself and get as much help as you can from your GP.
When our referrals get overlooked, we call the office.
Thanks Sanmason. Ive called this morning and being seen next week . Hope you are doing ok x
I believe it is normally 60mg. to start with I know it was for me.and it has taken me 19 months to get to 10 mg.
Staring at 60mg is usually with sight issues..otherwise 40mg.. 😊
I think i felt better on 40 mg .. feel out of it today on 50 mg x
I started on 60mg in 2022 and was completely out of it! Never want to go there again. It will all improve, hang on in there and take it a day at a time. That whole summer was a blur for me.
Unfortunately Pred can have that affect… but stick with it if you can…
Thanks DL I will do ,although up to now it's not really alleviated my symptoms. And the tiredness isn't helping with the headache . I'll stick it out though . Xx
Oh that's very interesting 🤔. I'm on 50mg. I hope you are doing ok now x
Hello Dee.
Glad you made it here. I've been diagnosed with GCA since mid-March 2024.This forum is being so helpful for me on my journey, and I'm sure it will be the same for you. People are so generous with their useful information. My initial prednisone dose of 60 mg. was quickly increased to 80 mg. which I know is high. The reason was I had jaw claudication which was slow to resolve and my rheum was concerned about vision issues, which jaw problems can make more likely. It took a couple of weeks on 80 mg for it to begin to resolve. I was on that dose for at least a month, then tapering over the past 10 months, greatly assisted by biologic drug Actemra. The pred caused many nasty physical sensations which I won't list, but as the dosage was decreased so were the issues the drug was producing. I encourage to be strong and noisy to receive the care you need, and if you're too ill to do that, my hope for you is you have an advocate to assist in the process. Take heart! I was so ill I doubted I'd have any kind of life besides laying on the couch. But I'm now out and about, like a "normal" person. I wish you the best.
Hi again Dee. RE: sleep I found that L-theanine, an enzyme helped me greatly. It also eases anxiety which pred and dealing with GCA produce. I took 2 caps an hour before bed. Now take 1 cap.
Thanks again, HW. Is that available OTC or do.i need a prescription? X
Just be aware HW is in the US, so what is available there may not be in UK, and our advice is always check first of any interaction between supplements etc and your medication before taking.
Aww thanks DL that makes sense. I actually had a better night last night and feel so much more refreshed.💕
Good…
Hello HWAww thank you for such a lovely ,positive response. Really brightened my day .
I'm so glad you've got to the light at the end if the tunnel. I will remember that and keep going. Thanks again for the advice with the drugs. I've made a note 😀
I'm so glad I found this group. Everyone is wonderful and so knowledgeable ,I feel stronger already feom all this imparted wisdom !
I will advocate for the best pathways and care I can get ,buy thanks for the reminder about taking someone with you. Always a good idea x
I'm so happy you are back to normality and have weathered the journey . I'm also so grateful you shared this with me xx
Sending very grateful hugs xxx
my rheum was concerned about vision issues, which jaw problems can make more likely.
Not sure that’s strictly true… all smaller arteries are branches of the Carotid, but it’s the ophthalmic artery [shown as a pale colour as its deeper within skull] which causes sight issues. I think your Rheumy probably meant the more arteries affected, the higher the chance of blindness, but that’s a bit random as well.
The two main red flags in GCA are visual symptoms and jaw claudication, In a study published last year it was found to be a predictor for increased risk of visual loss - especially if PMR and headache aren't being seen. I noticed the platelets fact somewhere else the other day - which I though was interesting.
"Older patients with jaw claudication, diplopia, and increased platelets are at higher risk for permanent vision loss, especially when PMR and headache are absent and acute phase reactants lower."
tandfonline.com/doi/full/10...
I stand corrected!
It IS a fairly recent paper!
PRM pro this is interesting as when I became ill last July I was initially put on 30mg of Pred (and short course of antibiotics) After 5days I was told to stop Pred so that I could have a PET scan in a weeks time. During which time I continued to suffer extreme fatigue, blurry eyes and then developed a lot of pain in my jaws (no headache or other aches and pains) Diagnosed with GCA after PET I was put on 60mg Pred for 2weeks then 50mg . Pred took a couple of weeks to kick when I could hardly walk and Platelet count rose above 632 then overnight my symptoms disappeared and I was so full of energy a suggested short walk turned into nearly 2 miles. Although I have read about risk of issues with vision no concern has ever been raised with me even though I have said blurred and water eyes are an ongoing issue at a recent meeting with consultant and annual opticians eye check. I’m now wondering if there is anything that will tell me if my sight is currently at risk and how I can mitigate this. I am currently on 15 mg Pred and hoping to taper to 10mg by early March ( still no response from consultant regarding this) My full blood test on Thursday showed everything in normal range (with CRP at 2) My consultant refuses to address my question on how he will know if the vasculitis (now referred to as LVV) has decreased/ gone away and I’m wondering if there is any guideline on the level of Pred needed to keep me protected . I did see somewhere on line that for LVV the aim is to be down to 5 mg at 12 months As always any words of wisdom you can share would be great fully received
The risk to sight was at the point you had the visual symptoms and jaw pain - they were signs that the blood supply to the jaw and optic nerve were compromised due to swelling in the artery wall that was narrowing the inside tube and reducing blood flow. Once you are started on high dose pred, that inflammation subsides rapidly if the dose is high enough and the blood flow is restored.
Unfortunately, one of the adverse effects of pred can be blurry vision which often worries patients. Your description of blurring and watery eyes suggests to me you have dry eyes - often a feature of autoimmune disorders and possibly pred. In dry eyes the eyes are not producing the normal viscous tears that protect the surface of the eye and keep it healthy, instead they produce copious amounts of thinner tears which overflow and give you watery eyes.
Monitoring LVV seems a bit complex and to be honest I don't know what is being accepted as suitable monitoring. A few members of the forum have had PMR or GCA previously, tapered down the pred dose but suspicious rheumies looked again when the markers rose again or they persistently felt well and discovered evidence of LVV. I suspect they are still learning a lot about LVV as it can be far more insidious than its relations!
I personally am very sceptical about time scales for reducing pred - even if you are also on a steroid sparer that works, like tocilizumab.
Thanks so much - reassuring as I have always tended towards watery eyes and wouldn’t have related this to dry eyes. Other than the initial PET and follow up blood tests there doesn’t seem to be any form of monitoring. Consultant didn’t even ask how I was feeling. Just asked what dose of Pred I was on and said to let him know what steroid sparer I wanted to go on. His previous communication of decreasing 10mg per fortnight would have meant I would have been on no medication at all be the time he made contact if I hadn’t kept chasing in knowledge that as the dose lowers this step change becomes too great
10mg every 2 weeks WITHOUT a steroid sparer?
Yes I really felt he had forgotten about me as at our initial consultation in August he said he needed to check if it was safe for me to have MTX. When I heard nothing further I wrote to him about continuing at this rate as in previous illness when on 30 mg I was told to taper at 5mg per month. No response. Even when I became really unwell and fatigued going from 30 to 20 I got no advice from him re Pret dose or from the rheumatology help line.. GP said I needed to speak to consultant as did A&E where I ended up. . So decided myself to go up to 25mg for a week then taper more slowly down to 20 and advised Help Line of this. Got a call to say Consultant advises I stay on 20mg until I next see him (they knew I had been to A&E) I wrote again explaining my symptoms and concerned they were caused by the tapering strategy. Received email saying consultant thought my symptoms may be due to the level of Pred and to go down to 15mg I was then alternating between 25 and 20 and replied that I would taper down over the next month or so when I felt things were under control to give me an acceptable quality of life. Looking on the forum it does seem others feel they are left to make their own decisions over tapering which is disappointing when you are new to an illness and are hoping for support and guidance from a specialist ( sorry a bit of a rant)
This idea they have that it is always pred that is causing problems rather than the disease infuriates me! A basic rule for tapering is 10% of the current dose.
newly diagnosed with giant cell arteritis 
Newly diagnosed with PMR 
Newly diagnosed
Newly diagnosed with Pmr
