Hello, I’m asking for help and advice as the wife (and carer) for my husband who was diagnosed with GCA on April 1st…I wish it had been an Fools’ Day prank, but alas, no.
He was put on 60mgs Pred stat and thankfully, the headaches and scalp tenderness etc, has gone but he still has double vision and his right eye is still looking out of place (cross eyed, to be blunt).
Due to high numbers of patients and no doctors where we live in Somerset, he can’t access his GP for help as they don’t answer the phones and appointments are difficult to get even in an emergency. It’s very worrying. Fortunately, we have an MIU near us to access as we did on Bank Holiday Monday.
My questions, if I may please,
Will his eyesight return to normal? Roughly how long might it take? Will he be able to continue a ‘normal’ life, ie driving, riding his motorbike? I’ve seen disease mentioned, therefore, is it a long term ailment and might it return? Are there other health issues that might arise due to his having GCA?
Nic had an inoculation against Shingles a week before this started and we’re quite concerned it was a trigger for GCA as one of the brands has been banned in the States but in the UK? Food for thought. He has Bone Cancer so his immune system isn’t up to parr.
Sorry to hear about your husband - hopefully the double vision will improve although the high doses of Pred sometimes cause that as well as the GCA. Not sure about the crossed-eye effect -that’s not a common GCA symptom. Something to discuss with local optometrist/ophthamoloist..,
He can continue driving -but maybe not for a few weeks until he has settled on the medication 60mg can make some a bit dizzy and disoriented..
As explained in link, it is long term - and adjustments to life do need to be made, but he should be able to live a relatively normal life…
Shingles vaccine may have been the final trigger for GCA-but doubt it’s the sole reason.
Has he been given a Rheumatologist appointment-and he goes need to see GP . If surgery first answer phones do they have an eConsult facility? If not sure check here
Thank you so much for taking the time and making the effort to write.
Obviously, we are in the early, slightly panicky stages of the GCA diagnosis and finding it difficult to get plain answers from Google and no help from the GP surgery.
I will look into the links you sent. Nic is finding reading difficult with his squint, so I’m doing all the research and trying to answer his questions.
A letter has just arrived saying he will get an appointment with a Rheumatologist. … that along with along a script for Prednisalone which he needed yesterday! Oh dear, our poor NHS, it really is struggling.
Thank you once again for your kind words and for the links, which will be most helpful. It’s very confusing when this sort of thing happens so suddenly, kindness and concern go a long way.
Bear in mind high dose Pred can make the eyes struggle with focus which can muddy the water when you are trying to work out what eye symptoms are GCA or not. I found that my eye muscles struggled to change from one depth of field to another quickly. If I looked up from a book my long sight was blurry and moving objects could make me feel swimmy. My optician said no point in new glasses unless I was desperate because it would keep changing with dose. One thing that did go with Pred was black spots and sparks of light I had before diagnosis. You may find yourselves asking each other a lot, “was this like it was before Pred?” with all sorts of things.
Regular checks for raised eye pressure due to Pred are worthwhile. I had mine done every 3 months.
Thank you for getting in touch. I’m sorry you’ve had to go through it. Nic has been on Pred for 3 days since diagnosis on Monday night. The hospital Opthalmologist gave him 2 days dosage (the script didn’t arrive until this afternoon. Nightmare trying to get Pred from a ‘closed due to training ’ GP surgery yesterday! I was away so poor fella had a wobbly three mile walk around and about to get the meds.) His eye went askew on Sunday…he is properly cross-eyed in one eye. It’s very disconcerting for him and he’s finding it difficult to walk in a straight line and he’s stumbling, partly because of double vision and partly the Arthritis in his feet. At least the pain in his head has gone, but still seeing double. Nic has Bone Cancer aswell, so we’re struggling at the moment. I thank you for holding out your hand in support and friendship. We don’t have family so we’re feeling a bit isolated.
I can't give any advice re the condition as I have PMR but I have found PMRGCA.org.uk very helpful (aswell as this site👍). The charity has support groups all over the country that meet regularly. Worth googling to see if there is one near you. Good luck and don't despair.
Thank you, I’ll have a look. Nic wouldn’t go but as a Carer of someone with GCA, I assume I would be welcome in a group. We have a drop of sunshine this morning, I hope you have too.
You would definitely be made welcome. I am involved with the Yorkshire group.
I haven't yet read through all the replies you've received, but an optician ought to be able to help Nic's double vision with prisms in his lenses, if it doesn't resolve when the prednisolone has started to take effect.
Righty Ho, perfect. I’ve kindly been sent a link for my local group in Taunton, so I will get in touch with them, thank you. He’s literally just had new specs (at great expense 😢 ) and I wonder if lenses with prisms would be private or NHS? Just a thought. Fingers crossed for the Pred to start acting soon.
I have prisms in my lenses and they are quite standard on the NHS - at an extra cost, of course! We have a friend who had stick-on ones (not for GCA). It was amazing how much more comfortable my eye muscles felt as soon as I put the new specs on.
This week will be so stressful for you and Nic, but when you look back on your diary, you will see how far you've come in a few weeks and months' time.
One in Taunton and one in Bristol - depending on where you are. Bournemouth is a bit far even from WIncanton ... There is an online one as well. You don't have to get Nic to go, spouses are welcome too.
We’re near Taunton, so that’s perfect. I’ll look at the link….I don’t know about Nic being cross-eyed, I think I will be soon with all this information! It’s like being back in college. 😂 x
I am so interested in your account of looking up from a book and having difficulty refocusing for moving around. I had cataract ops on both eyes last September and ever since then have suffered from the same thing. I also have felt pressure around my eyes and on my nose as if I were wearing phantom spectacles. I even made to take them off and found I wasn't wearing any! This reaction is very disturbing and disorientating and greatly affects my balance. I thought it was an after effect of the cataract ops but never thought it might be pred caused. I have been on prednisalone for pmr for abount 5 years and am now at 5mg.
I find it can take half an hour to really adjust from computer specs to distance ones for driving. It isn't I can't see with them, if I put them on as soon as I get up I can see fine, it is the change.
The shingles vaccine hasn't been "banned" in the USA - it isn't used because it is no longer manufactured as it has been replaced by a newer, better, more effective vaccine. As of last September it is the new non-live vaccine that is to be used in the UK - Shingrix. It requires 2 injections, has he an appointment for a second in the couple of months time?
It might have been the final straw that sent his immune system haywire - but it could have been anything. It is the culmination of various insults to the immune system over the years - including illnesses, trauma of all sorts, both physical and mental, environmental and chemical factors, medications. There is also a notable genetic factor - it isn't hereditary as such but there is a genetic influence that puts you at more risk of it happening if all the other factors are present. Any vaccine could be blamed - but usually, if you hadn't had the jab, it could have been any other of the factors, including the disease.
GCA is not an acute condition - it is a long lasting but usually self-limiting disorder and most people are off pred in 4 to 5 years at most. You start on a high dose to reduce the risk of sight loss very rapidly and then slowly taper the dose to identify the lowest effective dose - the lowest dose that gives the same symptom relief as the starting dose did. After 4 days it is a bit early for all symptoms to resolve but things should improve with time. DorsetLady is blind in one eye - she still drives. However, that is something to worry about if it happens. You will learn the answers to the other questions over time - too much to deal with here and today, just stick with us and listen to everyone else. Read DL's welcome post when it comes, read the FAQs and then ask specific questions, preferably one or two at a time or the replies can get very unwieldy and you will just get confused.
Should have said - GCA is classed as an acute medical emergency, in the same way as a stroke or heart attack. As such it is up to your GP to step up to the plate in the same way and if your local system has a GCA fast-track service they should get him on it pdq to see a rheumatologist as soon as practically possible, should be within a few days. Often you can find that out by looking online. Where do you live?
Thank you for your reply. We live in Somerset and have problems accessing our GP, but I’m sure/hoping we will hear from her soon. Appointments are impossible for the next three months, apparently. It’s very worrying. Nic is 76 and has Smouldering Myeloma and a long and complicated medical history. The vaccine was his concern as the initial symptoms were similar to the Shingles he had years ago - he thought he had a mild form of it again so waited before going to the MIU due to the double vision. He has the second dose of the vaccine in a few months time.
He is struggling to read with his squint, so I will read the links provided.
Just had a letter from the hospital saying there will be an appointment set up for the Rheumatologist.
Appointments may be difficult for non-urgent things. An appointment for GCA, a heart attack or a stroke are emergencies and they should be dealing with them. I do hope the rheumy coughs up pretty quickly though.
You are absolutely right, but my GP did not consider anything to be ‘urgent’ unfortunately and I am still waiting to see rheumatologist 10 weeks after I went to see him. I had already been diagnosed with both PMR & GCA in the US at Christmas whilst there visiting my son and family. I was put on high dosage Prednisolone 70mg, and unfortunately got steroid induced hyperglycaemia (another trip to the ER) so it was a very traumatic 6 weeks.
I had expected to get much better treatment once home and I had sent everything to my GP ( whom I had never met) in advance including bloods showing extremely high inflammation (CRP 239, ESR 92) anaemia etc so I did not expect such neglectful treatment. I finally gave up with him and changed GP’s 2 weeks ago. I honestly think he thought I was making it all up! The PMR he accepted but when GCA was mentioned he just shook his head. If he knew how bad it was and how potentially dangerous it could be he would not be so dismissive!
I also managed to see an ophthalmologist by my own resources who understood GCA, hurrah, and I am hopeful that he will look after me now. The medical help and support is so hit and miss and very stressful, especially when on high dosage Prednisolone!
You sound like the perfect wife and all credit to you for your support. GCA is a very unpleasant and truly unwelcome condition. The prednisolone journey is also full of drawbacks but is a necessary drug. It will at that level induce muscle wastage but at what level is uncertain as everyone is different in their reaction. Blindness is the worst fear and it seems that his early diagnosis and prescription have alleviated that worry. It sounds like he has many unpleasant things he is already dealing with so this must feel like the final straw. I am so sorry for him and also for you having to cope with so much. Sending you best wishes
Oh, bless your golden heart. Thank you. We have much to learn and it’s been a steep learning curve since Monday, but no doubt, with help from you and other kind souls, we’ll get there. Luckily we jumped on it early but who knew? As a retired Paramedic, I’m aghast and feel guilty that I knew nothing about GCA. I’m doing my utmost to support an already poorly man. Thank you again and we send you all the best.
Don’t feel guilty about not knowing about GCA -there are a lot of medical people who never come across it… and some of those that have, still struggle to treat it correctly.
Thank you, that’s kind, but I can’t but help but feel guilty. The vaccination for Shingles the week before put us in a difficult place; we thought the symptoms were because of it, like a Flu jab, giving him phantom symptoms. I’m surely going to make people aware of GCA in future! I can’t Imagine how it was for our Forefathers knowing zilch and being kept in the dark, so to speak. If Nic hadn’t gone bonk eyed, we would have left it, thank goodness we didn’t. Good to hear from you, and thanks again.
It is only in the last few years that it has become part of the paramedic training - or at least it is in Yorkshire, not sure about other Trusts. But Yorkshire has a trail-blazer in the field who I have no doubt has made her views known! There are plenty of doctors who know nothing about it either so don't beat yourself up.
No need to thank me. I'm just happy like others here to share what I have learnt. I have PMR as well, another one for you to read up on. I too knew nothing of this and its been 3 years+ and counting. If he wasn't slowing down before with all he has I'm afraid he will have to now. Good luck and like others say don't blame yourself for not knowing.
Small suggestion ; best not trying to read at the moment if he has an inturned or outturned eye. Forcing to focus will just stress out the other eye and make him feel headachy ,unstable and possibly nauseous.
Thank you so much for your message. I totally agree that he shouldn’t be focussing with his right eye askew, but Nic is currently in the process of sorting out his ‘affairs’ - meaning, going through his paperwork. Groan. I’ve asked him to take more care but I think he needs to do this. It’s been a shock, along with his Bone Cancer diagnosis last year, so he is quite determined.
He could try using a patch over the bad eye - but doing that for long periods is also not a good idea. He needs to rest and give his body a chance to heal. We know the high dose of pred makes him THINK he is invincible but it is a false friend.
He has always thought himself invinsible and knows better than anyone! Imagine being an Air Ambulance Paramedic and your husband not ‘allowing’ you to put a plaster on a bad cut! 😬 I’ve tried to get an eye patch in our local town but even Boots don’t have one! I’ll look into it. Thank you x
The big Am…. online will have them…. But as PMRpro says use only when he’s really concentrating on paperwork. .. and difficult though it is, try and get him to rest. Not easy I know from experience starting on 80mg of Pred….
But as you well know it’s what the body needs even if he doesn’t realise it… and the effects of Pred is likely to make him like a Duracell bunny - but it’s a false energy - and it will hit him at some point.
Ooooh - you were HEMS, my daughter would be so jealous!! Mine learnt early that I had a vague idea what I was up to. He was rewiring our very first flat and was chiselling a hole in a skirting board - accident waiting to happen as I pointed out to him just as it happened! I cleaned it out and made butterflies to hold it together. He worked in the Dept of Surgery in the Big Hospital and next morning went to find Sister on the ward as he thought I hadn't done enough. She asked was I a nurse and sent him away with a flea in his ear.
Haha, you truly understand my predicament. I have suggested Micropore on his lens but he said no, ‘because you’d have to peel it off’! How’s that for an answer! Typical of an Engineer. WTAF? He has a tissue stuffed behind the lens and feels ‘Okay, Thank you!’ I’ll leave it there. 😬
Ah yes. Himself started with engineering and switched to physics. Then medical physics. Had a German post-doc doctrate in physiology that let him be called Doctor of Medicine - thank goodness it didn't let him practise, but he was an HCP. Eventually I just left him to it ...
Oh dear, I hope I haven’t insulted anyone! 😬 My husband even corrects me if a say ruler… “it's not a ruler, it’s a rule!” Doh! He doesn’t make a good patient as he already knows it all. Thank you for your good wishes, I accept them readily. I hope you manage to enjoy life, it’s given you a bit of a bashing, by the sounds of it. Nic is in bed asleep, at last, his head is full of pain again today and his squint and double vision seems to be worse, it’s so difficult to witness. But on the bright side, spring has sprung and the gardens and hedgerows are burgeoning with life and colour. Mother Nature can be so cruel and yet so kind. I wish you all the best.
I'm sure you haven't insulted anyone! It makes us feel not so alone to know that we are members of yet another club that we didn't choose to join! 🤣
I manage my conditions well, although I say it myself! I don't let them get me down and take the right dose of prednisolone to give me the best quality of life possible. I have a wonderful Rheumatologist and hope Nic also will have the best care and promptly.
I have just come in from picking a bunch of cowslips from our garden - we have masses, so I picked just one stem from every clump. 🌺 Here are some flowers for you 💐
Awww, bless you heart, that just made me weep. Thank you you so very much. What a wonderful family I’ve found in this group. I’m so glad you manage yourself well. Once we have Nic sorted, I’ll go back to managing me! Thats not so easy 😉
Enjoy your cowslips as I will my bunch from you. x
If his symptoms don't improve with a rest - do please call 111 because the 60mg he is on may not be enough to manage the inflammation properly. Ignore his protestations - ask if he REALLY wants to risk his sight if he gets stroppy. He is probably scared stiff but can't possibly admit that he is out of control to you. But needing more pred is a very likely scenario I suspect.
Thank you, I’ll try to persuade him about the scarf, poor chap is in trouble with it again this morning, raging headache and pain in his temple. I hope the Pred starts working soon.
I know where he’s coming from… when I first lost sight in right eye it was very difficult - and I found if I covered that eye when trying to watch TV etc it helped - it put less strain on the other one.. so if a tissue or a proper handkerchief [if such things still exist 😳] helps, then let him do his to his own thing…
Plain Pred can take at least an hour to get into system, so hopefully he will soon feel benefit when it kicks in…
I have a lovely collection of cotton hankies, I love a nice hankie, in fact, I have the ones I bought for my Mum last year but she sadly passed before they were used. I will offer one up but whether the patient will take it, is yet to be determined! Thank you for your suggestion. He’s really unwell today, I’m so fortunate to have you all here to chat to.
Sounds as if current dose may not be quite enough then… so think you need advice on that… plus of course weekend looming.. if you can’t get an answer locally then please call NHS 111, but might mean an ED/A&E visit..
I know you’re in Somerset, but which is nearest hospital?
Thank you, that is good advice - the pain, squint and double vision doesn’t seem to be lessening today, even after the 60mgs of Pred at 0800. Getting him to go to the hospital is another thing entirely….
As I said previously not sure squint is totally GCA, and double vision could be Pred [common side effect] … but pain is definitely GCA.. and even though his Pred induced energy will make him think he can do more -he can’t… but as you say - a stubborn man… [sorry gents who aren’t 😂🤣]..
Re feeling guilty about not knowing about GCA before it hit ... I wonder how many of us here knew it existed before being diagnosed. I certainly didn't.
Whether or not the shingles vaccination had anything to do with it is uncertain. My GCA came shortly after a Covid vaccination, but as others have pointed out, it was probably a tipping point for a latent susceptibility to an auto-immune condition.
Wishing you both all the best and despite not having family around, this group is a brilliant place to share, vent and ask questions. You did well to find it so quickly!
I would say most of us on here had never heard of GCA before it hit. I certainly hadn’t. Only one friend had heard of it but that was because she had PMR.
Thank you. As a retired Medic, I was feeling ashamed of myself for not even hearing about the condition and thinking the vaccine for Shingles was having a phantom effect. I don’t feel so bad now. Take good care of yourself.
Thank you so much, I already feel as though we are part of a family with helpful suggestions and support. We aren’t used to asking for help as we are just us two, but I just felt overwhelmed this morning and wrote what I felt. The response has been wonderful and I am so grateful.
I think the vacs was a tipping point as he wasn’t quite well in the evening after the vaccine. His immune system isn’t good due to bone cancer and other ailments and I think it pushed his system over the edge. We’ve had a huge amount of stress with my health issues too; its no wonder his health is spiralling.
I only have PMR, but never heard of that before like many on here. You really will get all the answers you need on here and will probably soon be advising you GP! That's what I do now because I don't think she has much of a clue! When you have a new question do it on a new post. That way you'll get answers more quickly.
Thank you, I’m sorry to hear you have PMR, it must be difficult for you. It’s been a steep learning curve since Monday, as it is for everyone with a new diagnoses of some kind, but we’re getting there and I’m sure we’ll be advising the GP…if we ever get to see her. I’ve not been on a forum before and I appreciate all the kind responses and great advice. One question at a time is duly noted! Himself wants another coffee, so I had better get to it! Thank you again.
You can ask more than one thing, just not too many at once or it gets too confusing. But the major point is not to ask in the middle of an existing thread because then only the person you replied to, DL and I are guaranteed to see it, We will always reply but it's unlikely anyone else will notice.
We're similar to you Nicswife, no family and multiple health issues. You can feel very lonely, but this forum is great. Even if you're just feeling a bit low and need someone to chat to there will be someone there for you. There are lots of members from outside the UK so there's generally someone about at all times of the day. Look after yourself as well as your OH. All the best to you.
Thank you so much for your comment, I’m feeling very welcome and comfortable here already. I’m sorry to hear your circumstances are similar to ours, it can be tough at times. We were feeling very isolated, particularly as everyone we know is completely embroiled in their family life. We don’t have children, Nic doesn’t have any family and mine are on the Isle of Wight (I’ve been on the Mainland since I was 20, so 40 years this year!). This latest ‘episode’ has made me want to go home more than ever but Nic isn’t sure. Life on an island can be quite constraining. GCA might be the turning point for us but having to travel over to Southampton General for anything major is an expensive bother. It’s good to know you’re all out there and the time zone difference is very handy for 3am chats! Why does everything always seem 10 times worse in the wee small hours? Thank you again, and take good care.
What about moving closer to the ferry? I, too, am entirely alone here in Italy and my daughters are in Whitby and near Edinburgh. OH died 2 1/2 years ago and the first thing one daughter said was "you must come home". I wasn't ready then, but it is getting closer - except here I have a GP I can see same day, I have a world-class PMR rheumy and am on Actemra. The foundations for my granny-flat have been "laid" but the combo of the weather in Scotland and GP/rheumy/medication availability is putting me off making the final decision as to when. Won't be during this parliament unless there is a medical emergency but even in that case, I'm probably better here! I had an ablation for atrial fibrillation in January - and that was when I realised how alone I am here. But although the house is a reality for my daughter, my bit needs a lot of work yet ...
I’m sorry to hear about you losing your OH, that must be difficult at times. You’ve been through the medical mill of late, I hope you’re making a good recovery. I’d love to venture out but sadly Nic is now becoming a 76-going-on-90 year old, which is as much of a shock as his diagnosis, in a way. He even said he will give up his motorbike, which is telling in itself. He loves that old bike!
You will know when the time is right to move, you sound very sensible and thoughtful. How lovely to live in Italy, and the medical resources at your finger tips, I envy you that. I have looked at living near the IoW ferry but it’s the day-to-day stuff I will need help with in the future, and I’d love to see the babies in the family growing up. Not wanting to be a burden, just the odd bit of support and knowing I can call on someone who cares.
I hope the sun is shining for you, it is shining here for a brief moment between the showers.
Looks like a dollop of Sahara dust - we are about to have the dubious honour of being almost the warmest place in Italy for the weekend as well as the northernmost!
Yes - mine suddenly became 10 years older than me instead of one year some years before he died. It became even more marked during Covid. A strange effect - he remained as he was as a a student for years while I progressed to being an adult. Then later he suddenly aged while I remained in early middle aged, My brain thinks I'm 30 but the body didn't get the memo ...
I think it's good he got the vaccine as by all accounts shingles is very unpleasant. You don't say if it was the single shot live vax, Zostavax, or the two dose inactivated version, Shingrix. In either case it is unusual for a reaction to occur more than three days or so after a vaccination, but you never know. Zostavax is actually not recommended as it's a live vaccine and where possible these should be avoided by those of us taking steroids.
As far as I know Zostavax wasn't banned as such, but phased out because Shingrix is actually far more effective in the older population which most needs it, and maintains its effectiveness better. Btw, if one has had Zostavax I'm pretty sure it's possible to have Shingrix later.
We didn’t know which vaccine (until today) as he didn’t ask, but apparently it’s Shindrix as he has another appointment. We thought it might be Phantom symptoms (like a flu jab) due to his vaccination in the week previous to the onset of GCA. He had Shingles years ago in the same place so we were trying to make sense of the symptoms, especially as it was Bank Holiday weekend and 111 phones were busy. Thank you for your reply. Take care of yourself.
Hi, I’m not sure, it’s very difficult to get anything from them at the moment. They’re constantly closing for training and phone lines don’t work because they don’t have staff. I’ll look into it. Thanks for the suggestion.
It’s new to me but I’m looking into it. I suppose it’s the future when GP surgeries are over subscribed and short staffed like ours. One of our 3 surgeries recently closed because they couldn’t find GP’s willing to move to the South West (lower wages?), and most of our GPs are going part time. So different to when we moved here 10 years ago; we could get an appointment within an hour, now there’s a 3 month waiting list. Onwards and upwards now I have the App! Thank you.
I know how it is your way because my daughter is a Doctor at Torbay Hospital. The econsult thing essentially works as triage. They look at them all as they come in and either give advice or admin help, send an app for a F2F that day by text or text you with a phone app that day. If they think it can wait then they tell you to book a routine appointment. I use it loads and it saves soooo much time!
We have the similar issue in Dorset... not enough excitement for young GPs, not enough money for all...and virtually all those already here, part-time.
Mind you - most who do part time work at least a day a week in hospitals improving their special interest skills. I think there are 16 in one practice in Whitby, mostly PT and mostly couples, but all have at least one outside post and some two.
I’m looking into it now, DorsetLady, thank you. I’ve just downloaded the NHS App…I think I’m a bit late to the party, I should have done this a long time ago!
I’m not sure, he has an oncology appointment next week so I will make sure I’m there to discuss. Nic is hopeless at asking for anything and hates it when I ask questions, but needs must sometimes. Thank you.
Yeah - OH did that too, accepted it all, never asked a question but he did at least leave it to me. The GPs hated it - but their record had been pretty dire, left to them he'd have been dead in 6 weeks as they diagnosed a cough due to a massive tumour as asthma instead of sending him for an x-ray. Luckily he went to work and mentioned coughing up blood to a colleague who sent him for an x-ray "to take to the GP appointment this afternoon" - by which time he was in theatre having a bronchoscopy, also arranged by his colleagues. They saved his life.
Good Lord, the exact same thing happened to my brother, who sadly didn’t make it. I was brought up by SRNs; Mum was a Health Visitor and Dad a Community Charge Nurse and Nursing Officer, so I heard about Doctors and their ‘little ways’ and sadly, neither parent had much time for most of them. Dad was given a ‘script pad and basically told to get on with it whilst the docs were golfing or sailing! Dad ran the Isle of Wight community health service back in the 60’s and early 70’s.
I went to medical school (twice) though not to get a medical degree and we both worked in the NHS, many of our friends and colleagues were medics of some sort. Saw enough of them to know there were those I'd trust and those I wouldn't allow to see me over the road! The second cohort contains a lot of GPs I fear.
I won't add to the great responses you have had, but would say start writing a diary now of everything that has happened chronologically so you always have that information when people ask.
If you have a good ophthalmologist around I would make an appt to see them
and last, write a very stern letter to your GP stating this is a serious medical condition and you need to see someone and take it in by hand and say very loudly that you need someone to read this Today
Thank you, I have started a diary of events this morning, it’s a good idea to keep track of what has (and hasn’t) been happening. It’s been a roller coaster ride since Good Friday when the GCA started and we are both fed up with our GP practice. I’ve been looking into complaints procedures this morning, but I think you are right in suggesting a letter direct to source. Nic is really bad again this morning, it’s difficult without the physical support of his GP. Thank you for your help.
I had 3 days of 1 gm pulse therapy before starting high doses of pred. Perhaps that should have been on that path.
Feel for you, it's so hard advocating for someone's health, make sure you look after you too. I've been there like PMRPro and DorsetLady and it's tough. I had a very resistant husband who wouldn't comply with anything....
Sorry about the GCA, but you are in the right place....I had double vision and my Ophthalmologist said it is from dry eyes due to pred....He told me to use Genteal moderate eye drops several times daily, and Refresh eye gel which I use a couple times daily.......then at bedtime Systane eye gel....double vision disappeared after day 1....
Thank you for your message. It’s a little confusing because Nic had the double vision and his eye was turning inwards two days before the diagnosis and starting on Pred. The double vision and crossed eye is why he finally gave in and went to MIU, we were then sent straight to the Opthalmolgist in A & E who subsequently diagnosed the GCA. Nic started the Prednisalone on Monday PM. We’re just hoping the eye and double vision will sort itself out. He is determined not to ask for help or advice as he says he wants to ‘give it time’. He might need drops and we will ask his GP on Monday. Have a lovely weekend, let’s hope there’s a little more sunshine.
"Giving it time" is all well and good but in GCA it could be the difference between going blind and not. That doesn't seem to have sunk in - and we aren't being dramatic. At 60mg it shouldn't happen but if the symptoms worsen it shows the dose isn't enough.
However - the strabismuss and diplopia can be Horner syndrome which is due to 4th cranial nerve palsy and can be due to GCA:
Thank you, I’ve looked at the links. His R eye is still looking inwards (Esotropia?) he still has binocular diplopia, and his ‘selective’ hearing is as per usual. Mild tenderness to his scalp and R temple. I have read the brief letter from the hospital Ophthalmologist and he makes no mention of the Esotropia. I did point it out to him but it didn’t seem to bear any importance? I have told Nic, in no uncertain, yet kindly terms, that we are off to see someone tomorrow if there are no changes. You are perfectly right to state its seriousness. He says he knows it is but he’s not panicking! Give me strength! Forget the capital E, I’ve upped it to capital F! 😮💨
I haven't had GCA but PMR. I had GP support for two years before I could be referred to a rheumatologist but to be honest, they didn't know much. I experienced a major (probably Covid induced) flare after 18 months which is when I found this forum as I couldn't get any sense from the GPs I saw. They were helpful, and thankfully in this area not hard to access but just not well enough informed. There are consequently a number of things I wish I had known from the outset so I would say do as much reading as you can via this Forum and educate yourselves as you will need to patch together information for yourself. Good luck!
Thank you for your words of wisdom. I’m beginning a list of things I know and things I need to ask - this forum is just brilliant! I’ve also started a diary, as recommended, because both mine and Nic’s memories aren’t what they were. It’s amazing what we’ve already forgotten about the onset just last week. Fingers crossed no more flair-ups for you, it’s just tiresome being ill; PMR or GCA, they are both plain unwelcome nuisances. Enjoy your weekend.
Haven't read all replies so sorry if I repeat. I live in Somerset and started with GCA 3 years ago. Am now down to 1mg and hopefully off soon, fingers crossed.
I was treated at Musgrove; the rheumys I saw there were pretty sound in their advice. There is also a helpline you can contact staffed by a nurse who refers back to a consultant.
In Taunton you will know of the opticians Earlam and Christopher. I go to Edward Farrant there for a regular glaucoma check up and also to keep an eye on any GCA issues. He is like an optometrist-plus and also works at Musgrove. I recommend Edward.
GCA and pred are tough but time limited and there are worse things to have.
Suggest you familiarise yourself with the information on the forum, particularly about tapering and flares. And ask us anything, anytime. X
Hi Viveka, thank you for getting in touch. Yes, I know of Earlam and Christopher, Nic has always used Specsavers but it’s obviously time he went to a more specialist Optician and I thank you for recommending Edward.
Musgrove has been brilliant with Nic’s Prostate Cancer and Myeloma, not so great with my elderly Mum last year though. What nightmare that was!
Interesting to read about the helpline for the Rheumatoligist; Nic has a referral but no appointment yet, naturally. We wait in hope. The Rheumatologist Mum saw in Exeter was absolutely hopeless so I’m happy to hear good things about Musgrove.
Good to hear you’ll be off meds soon and fingers crossed for you.
Tapering and flares duly noted on my list of get-to-know about GCA. The list is getting longer by the minute.
Thank you again for your help and advice. Have a lovely weekend x
Actually Specsavers can be very good… but it may depend on the optometrist holding the franchise… but they do have to go through a rigorous training programme with the company..
It’s been a bit touch and go over the years we’ve lived here. Staff changes have meant a slightly erratic performance, but in general, we have always been served well.
To be fair - Specsavers are excellent and often are the local MECS/CUES representatives. Personally I'd always choose an independent but SS do have some good things about them - in this case, Chard is your nearest MECS/UES option.
The Prednisone will help his eyes and ro keep him from going blind but it had its own side effects. The most important thing right now is for him to take the Prednisone and then top gradually start reducing it. I'm dealng with the same issues. It took me six months to get an eye appointment. I saw there eye doc last week. The good news is that the Prednisone hasn't done any permanent damage and I'm not going blind. The bad news is that due someone bit properly cleaning their equipment I now have an eye infection. Grrr...
Oh no, I’m sorry to hear you have an infection, grrr indeed and SO not good practise; there’s a litigious case in there somewhere. When I left the Ambulance Service, I trained as a Dog Groomer (I lasted 6 months with my back injury - it’s very hard work!), I sterilised each and every piece of equipment i had used and washed down my salon between each dog. It’s hard to believe someone can’t be bothered to do the same with human people.
Good news with the long term vision though. There’s always a silver lining if we look for it.
I wish you well and thank you for your help and advice.
Nothing to add, really, just to say that you sound like an optimistic and very caring person, and I wish both of you well 💐 greetings from nearby South Wilts!
Hello from over the border 😀 Thank you so much, that’s very kind - we’re obviously quite alike. We are supposed to be taking a break in Devizes in May, but unless Nic’s sight normalises, we can’t go. Imagine seeing a double set of Caen Locks? 😮💨 Fingers crossed. Take good care of yourself x
Hi. I had double vision which made me go to the eye hospital. I had the 60 which was tapered to 50 ,40,30 weekly I think and then a slower taper. I was on steroids for 18 mths.I was under the rheumatologist at our hospital and got a number I could ring. My inflammatory markers were really high and they regularly checked that with blood tests before checks with dr who I saw monthly initially and could ring a specialist nurse in between. Double vision helped with ophthalmologist and different glasses it did improve .I had regular help with glasses from the eye hospital with prisms added. Hope that helps.
Hello, thank you for your comment, it’s an interesting read. Nic’s double vision and wonky eye isn’t changing and he has accepted that it’s going to take a while. Nic is waiting to hear from the Rheumatologist - I hope it’s not too long a wait. Good to know you had Specialist Nurses on the end of the phone for support, they are such a help.
We were wondering how long to wait before speaking to an Opthalmologist; seems a bit early days to go down that road, but should we get the ball rolling? Not sure yet.
The condition has helped us make a few life-changing decisions today, which we had been putting off, so there’s always a Silver Lining 😃
I’d be getting input from an ophthalmologist-or least from an optometrist locally early on.
You haven’t said, but I’m guessing there was no involvement from ophthalmology on diagnosis .. so would think it very sensible to get advice from them.
On another subject, not sure you’d want to be on a Red Funnel ferry crossing the Solent today💨💨!
Hello, just a quick update. Nic saw the Optomotrist this morning (55 minute appointment 😳) She is very concerned as she has not seen such a problem with GCA before and in fact, a TIA was mentioned, which somewhat muddies the waters. She has referred Nic back to the Eye Department as an urgent case.
If it hadn’t been for prompts on this forum, we would have waited for his Rheumy appointment on the 18th, as we were told to do, which may well have been too late for his sight…he might not get his normal sight back anyway, apparently. Prisms or an operation on the muscles to hold his eye in place were also mentioned.
He was booked for a biopsy this morning but the Consultant rang and said his ESR & CRP numbers were fine, so not to bother.
Thanks for update… so pleased you managed to persuade him to go.. and well done the optometrist. TIAs are often mentioned on here in relation to sight issues…and now at least he is being treated as he should be - an urgent case.
Not so impressed with the consultant and biopsy advice given, but won’t go there… and I found the ophthalmologists a different breed… so good luck and do keep us informed..
Obviously if you have more concerns or Eye Clinic are back to you quickly with appointment then chase them…
Unfortunately, I was out, otherwise I may have had something to say although Nic has the option to change his mind…at least we know the Consultant isn’t playing golf instead - the weather is filthy down here today!!
Optomotrist right on it; phone calls hither and thither getting second opinions, plus the urgent referral back into the Eye Clinic with an email and letter.
Sorry, I missed a bit earlier! He was diagnosed by an Opthalmologist at Musgrove A & E on Monday; he did bloods, visual acuities, prescribed Pred., etc. No follow up apart from the referral to Rheumy.
….when I was a little girl, Dad would very occasionally take me on the Yarmouth to Lymington ferry in bad weather, just for fun. It’s a flat bottomed boat so it was quite a dramatic crossing to say the least! We’d go out on deck and feel the full force of the storm whilst everyone else was huddling in corners or hanging on for grim death. We would have a full English and the china cups would be ratting like crazy and filling the saucers with tea. I’ll never forget that sound or the feeling of the ferry juddering and heaving in the swell of the Solent in sight of the Needles. It was very exciting! I think it was a way for him to let off steam from his job.
Okay thanks… well he was obviously happy with sight issues [or rather no issues] regarding GCA… did he comment on the crossed-eye effect or didn’t Nic have that at the time?
As said previously blurred vision can be side effect of Pred, and although it’s discombobulating so long as it not GCA associated it not a dangerous.
Solent can be quite rough can’t it…. but probably not as much as The Minch [between Outer Hebrides and mainland Scotland… hubby was posted there for a couple of years] had a couple of trips across that I’d rather not remember… 🤨
He had the one crossed eye, which I pointed out several times as the Dr might have thought it normal for Nic, but he didn’t seem bothered or note it in his letter, surprisingly. The double vision and his eye problem (it’s more of a lazy eye as it wanders), started three or four days before Nic decided to go to A & E, aswell as a severe headache, scalp and temple tenderness, pain in his jaw and distended vein on his temple. It was all present several days before and got worse over the Easter weekend. We attended our local MIU on Monday, then sent straight to Musgrove Hospital with all symptoms present. The eye complaints are the only things still presenting; the scalp, headache and temple issues have gone, thank fully.
As you say, he may have thought the lazy eye was a long standing issue, but if you commented on it, then he should have double checked it.
Hopefully Nic will discuss it with the optometrist next week… and get him to mention the double vision - and that it started prior to Pred [sorry I had misunderstood that].
Good to hear the other symptoms are improving… that, at least, is a good sign…
That was us on cross channel ferries! The rougher the better. One North Sea crossing on my own, I was in a cabin in the bows and I was sliding up the bed until my head touched the wall then sliding down until my feet touched the other end! I went out for a walk to find a deserted ship except for the security guard - everyone had retreated to their cabins - or more likely, the bathrooms ...
We spent a crossing from Boulogne - ship instead of fast ferry because of the weather - out on deck after having spent the first 20mins in the cafe seating area eating the picnic we'd bought before boarding. Himself had wanted to get in the queue - I insisted on the important stuff, the shopping, and was right as the crossing was delayed. Everyone else looked at us as if we were crackers, the waves were breaking over the front windows of the cafe, and obviously wondering how on earth we wanted to eat! We braved the loos while they still didn't smell too much and then went outside with about 20 other hardy souls. Hilarious! Well - we thought so ...
How exciting! A smooth sea never made a skilled sailor - or passenger. Good idea using the bathrooms before those poor suffering souls got there; travel sickness is an awful affliction, I imagine.
As a person who has had GCA I have read all the comments with interest (and sympathy!) I can‘t help wondering if your husband has read the comments that are so helpful and understanding. Could you convince/persuade him to? It might help him to know he is not alone, and reduce his anxiety and fear. I live in rural Alberta, Canada ( originally from Cornwall!!) and have to travel for medical help. I had a biopsy to initially diagnose the GCA ( 6 months from the original nightmare headaches) (An old woman with a headache? Here’s some pills!) but now luckily it can be detected with an ultrasound. Take heart. People on this forum are wonderful. Tell your husband!!
Thank you for getting in touch and sadly, mo, Nic wouldn’t read anything like this. Without wishing to be harsh, he ‘knows best’, so my suggestions via this wonderful Forum are (mainly) being ignored. He just prefers to do his own research. He can’t read small print due to the double sight and his one eye mot focussing. He has made an appointment to see an Opthalmologist but only after I cancelled our holiday and several people urged him to see someone earlier than later. He’s stoic, deeply thoughtful and leaves me to flutter around trying to find ways to get him on my wavelength! He calls it ‘nagging’ 😂
Do you miss Cornwall a little? I occasionally work on Bodmin Moor and we holiday in often in Falmouth and St Mawes, I love it down there. I’ve not been to Canada, but would love to go.
Our forum friends are indeed wonderful, I am so grateful for the support.
Take good care and thank you for your encouragement.
By this time in a marriage we know what we’re dealing with!! Yes, I miss Cornwall, particularly in the Spring …the primroses, daffodils, new lambs, even the rain! Here, we are just emerging from winter, the snow still remains in the shady parts. Yesterday we heard the first heart stopping trills of the American robin, back from his winter stay in the south. My basement plant room is full of healthy seedlings, hope springs eternal!!
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