Having just been through a week of hospital after my mother has lost most her sight in one eye and is being treated for Giant Cell Arteritis - can anyone who has been through this tell me how the years play out after diagnosis? At the moment she’s terrified. Thank you zxxx
Mother has Giant Cell Arteritis - what does the f... - PMRGCAuk
Mother has Giant Cell Arteritis - what does the future hold?
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TheSmartestGiant70
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Hi,
I’m not the best person to reply to you but wanted to let you know there was someone out there.
It’s a bit late now but I’m sure the experts will contact you in the morning.
I just wanted to say that I was diagnosed with GCA in April. I was lucky that I have not experienced any sight loss but there are people on this forum who unfortunately have.
I was also terrified when they first told me what I had. It is a slow and long road but the important thing is starting on steroids which will help your mum to get through this.
I am feeling a lot better than I was at the start and never thought I’d get here. I am hoping to return to work in a couple of weeks.
Stay in touch via this forum there are some amazing people here who will give you excellent advice tomorrow. They have helped me immensely.
Please take care sending a big hug to you and your mum X
Thanks snowy12 for replying as i don't have gca its nice for people to hear from someone who has. YBB
The member who is probably most knowledgeable about sight loss from GCA is Dorset Lady; there are a couple of others. You can find her by searching for her by user name. But it is critical she be on steroids.
I am sorry for her and for you as her daughter. I see I am not the only one who recommends Dorset Lady. Also be aware that GCA does not just effect the eyes and head, but can effect all large blood vessels in the cardiovascular system.
This forum can and will provide as much emotional support for both of you as is possible. 💐💐
Welcome to the forum. I am very sorry your mum has been diagnosed with GCA and can understand her fear. I have pmr but i know Dorsetlady who is an expert on gca will be along to give you all the advice.you and your mum need. Could you please fill.in the profile page as this helps us give you more relevant advice.
Are you in the uk or states? If you are in the states it maybe that you dont get replies for a few hours as the uk is mainly asleep now but dont worry you will hear back quickly.
Once this has sunk in please feel free to ask any questions there is usually always someone àbout to help. Love and best wishes to your.mum. YBB
Hi the smartestgiant70, I am so sorry to hear your mum has sight loss with GCA. I presume the drs have put her on high dose prednisolone (UK)/Prednisone (USA). This should prevent anymore sight loss. I am afraid the sight loss that has occurred is permanent which can be very hard to accept. The high dose pred can bring with it its own side effects- insomnia, sweats, hunger etc. These can be managed with a little work.
The good news is that if the pred is slowly tapered the GCA will burn itself out. It is thought that 40 to 80mg of pred will usually bring GCA under control and after a few weeks the pred will be slowly reduced. But if your mum still has any symptoms like more vision issues, headaches, scalp tenderness, painful jaw, the pred can be raised.
It's not an easy few months, or years ahead but with luck she will feel much, much better as the inflammation is controlled. There are some more tests (e.g. bone scan) your mum should have as pred can effect the calcium in your body. But more of that later, hopefully when DorsetLady's welcome wagon comes along you will get the overview of GCA and PMR.
My father had sight loss for different reasons and the RNIB in the UK were very helpful, if you are elsewhere in the world there will be an organisation similarly placed. Here's the RNIB in case you are UK based.
I hope your mum and the whole family feel better soon. 🌻
Your poor mother. I can imagine it must be an horrendous thing to happen. At least they diagnosed GCA fast enough for her not to totally lose her sight, but losing any part must be really awful. She will have been given quite a high dose of steroids and when she comes home will continue to take them. As things improve she will need to slowly reduce the dose which can be hard but people on this forum have got lots of good ideas to make it as easy as possible. Steroids can have a myriad of side effects, although your mother may be lucky and have none at all. She is probably looking at two years at least of GCA being active but eventually it goes into submission although there is a small chance it can come back. The important thing is that she finds out as much as she can about GCA and how to live with it. Following this forum will give her lots of help. Good luck.
I should also say that so far, I only have had minor side effects from steroids; everyone is different of course, but the negative effects are far outweighed by the positive effects. Give your mother as much moral support as possible, and ask friends and other family members to do the same.
Very sorry to hear about your Mum. Our expert Dorset Lady will be sure to give you advice very soon on GCA.🌸
DorsetLadyPMRGCAuk volunteer
Hi,
Sorry to hear about your mum, and I know how she feels. But now she is being treated she will be okay. Alright she probably will not regain any of the lost sight - but it won’t get any worse.
However it will take time for her brain and herself to adjust to mono-sightedness. She may well have headaches for some while, both from the GCA and the strain on her one good eye, she will be liable to spill liquids when pouring a cup of tea etc, and she may have trouble walking outdoors on uneven surfaces, and bumping into things on her “blind” side.
This first post covers both GCA and PMR and explains what she might expect - hopefully it will help you too -
healthunlocked.com/pmrgcauk...
These 2 give a bit of an insight (no pun intended) into life with limited vision -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk....
You may like to read this from RNIB - but mono- sightedness is not regarded as a disability (provided other eye is okay) - and it’s not, but it can be a n annoying impairment. -
rnib.org.uk/eye-health/eye-...
The most important thing is - time - time for her to come to terms with her new life - and your support through her difficult times.
If there is a local group in your vicinity that might help as well, then your mum will realise she is not alone in this.
If you want any further advice please come back at any time, either on main forum or Private Message me.
From a GCA / PMR sufferer , I can tell you that the most important thing she needs at the moment is your company.
The fact that you are on here looking for advice to help her shows how much you care and that she has a great support network from someone whom is willing to learn about the illness and give her what she needs .
That connection and support , someone willing to do the legwork and give her reassurance, is the most invaluable aid she will have in the early days.
Giving her time to rest , to talk about her fears if she needs to , a cry on your shoulder , and slowly come to terms with the changes and the new drug regime is the most important thing.
Advocate with Doctors , Specialists or any other people involved in her Care as she will feel tired and a little overwhelmed by what's happening. Go to appointments with her and if she forgets something in them let the Doctor know what you have noticed too.
It takes time to accept things , I haven't lost my sight so to do so must make accepting things and adapting that much harder . I have blurred vision at present and I know that's hard enough.
Don't give her too much information too soon but teach her little things about her illness and how to make things easier each day , in small easy packages.
Get her to sleep when she needs to , not just when she thinks she should , and pace herself equally relaxing and doing things , getting used to high dose steroids is tiring on the body.
Give her a few weeks to get used to the drugs and note any side effects , you can post here anytime for extra advice on how to cope with them.
If she needs any diet changes wait a few weeks to a month before you slowly change things so the body has time to get used to steroids before it has to get used to changing foods too.
Tell her not to feel guilty if she has to cancel plans or take things easy , she needs to look after herself first now.
Be prepared to fend off visitors , family or friends , or at least reduce the time of visits even if she thinks she can keep going, as most activity , especially early on is tiring , even the good stuff is a type of Stress on the system and the Eye.
She may feel great while busy , she will probably believe she is resting , but she won't realise just how much she is doing and be exhausted the next day.
Most importantly , tell her there is hope , things will get better and give her lots of hugs.
Please keep dropping back for any advice for your Mother , or for support for yourself , we know it's hard on Carers too , and sometimes when we feel really bad we can forget to appreciate you as much as you deserve for all the help you give.
And , if you Mother ever feels up to looking in and having a chat with people whom understand and can help lift her spirits we would all love to chat to her too.
Take care xx
Hi - so sorry to hear your mum has lost the sight in one eye. It could have happened to me but I was sent to hospital, put on massive dose of prednisone which saved me. That doesn't help, does it? Apologies.
I was constantly scared but had good support from my rheumatologist who said GCA is treatable, manageable and (for some) curable. It took 18 months to come off prednisone for GCA. This week I asked my doctor if there was a chance of it returning and he said it is possible as the disease is lurking . . . in remission. At least I know what to expect and who to contact, where to go.
Hi,
So sorry to hear your Mum has lost her sight. It is terrifying and thankfully your Mum is on prednisolone to save her other eye. Presume you’re in the UK?
I did lose sight in one eye but was very lucky to be put on pred quickly and it saved the eye. I still suffer with blurred vision and occasional visual disturbance - especially when I’m tired.
High dose pred will cause side effects - mood changes and hunger for starters - but these will subside as the dose is reduced. Follow doctors advice and don’t be in a hurry to reduce as that isn’t the answer. Trying to rush will only result in having to up the dose again. Think DL will send you the tapering plan that worked for her. Use it as a guide and as we are all different it can be tweaked to suit.
Giving your Mum love and support is the best thing you can do - she will have good days and bad days and you can’t expect her to pull herself out of it ever. It doesn’t work like that. Mum will need plenty of rest - and may not sleep well at night while on the high doses of pred. The first year will be the worst but things will improve given time.
I have GCA and PMR came along after about 16 months. I’m 5 years 6 months since diagnosis and on 4mg. I might not be the best example of recovery as I suffer bad withdrawals every time I reduce. These can start on the day of a reduction but usually go after a few days. They can mimic the illness. Should symptoms come on for no apparent reasons ie no reduction then see the doctor ASAP. Ask your Mum to tell you every little niggle and that she isn’t being a nuisance. Keep a diary of her symptoms to share with her doctor/rheumie. Always go with her for appointments and have a list of questions you want to ask.
You are at an advantage having found this site early on in your Mum’s illness. There will always be someone to share your anxieties with.
Best wishes to you both.
Thank you so much for all your replies - my mum has two specific questions - one side of her head feels numb and heavy - pretty much since diagnosis - is this normal? She is taking the steroids. The other thing she is finding taking a shower stressful beyond belief - she breaks down as she can’t feel where the shampoo is on her head, she feels too dizzy to stand up and even feels like she will fall off the chair - did anyone else experience this?
What dose is she on now? And exactly how long?
I found the headaches took about a fortnight to subside in all, and I suggest that the numbness and pain still need a bit longer to be fully addressed. Give it a little bit longer, and then if no better speak to the Rheumatology Dept at the hospital.
The dizziness is no doubt a side effect of the steroids, and will wear off when her body has acclimatised to the high dose - and as she reduces. In the meanwhile she just has to move slowly, particularly her head. It is frightening, but again it’s a matter of time while her body and brain adjust to the sudden changes - and shock she just gone through.
I don't know there is a "normal".
I suspect that it is the result of poor blood flow in the scalp that has led to nerve damage which will cause the numbness. There are some horrible images on the internet of the sort of skin damage that can result from vasculitis in the scalp - she is very lucky it didn't get to that stage, real ulcerated wounds. Not that that is any consolation.
If she is struggling with showering even sitting - will she let you help? I recently had a pacemaker fitted and couldn't use that arm to do anything - so I booked a wash and dry at the hairdresser. Does that sound like an idea? Taking hairwashing out of the equation makes showering easier. We don't need to scrub with a load of soap - we really don't get that dirty nowadays - and I just play the hand-held shower head over me. Then I wrap myself in a towel and drip dry. Is the shower big enough to put a garden chair in there? So she has support when sitting?
A lot of living with PMR and GCA in the early days comes down to thinking of different ways to do things - like sitting in a garden chair in the shower and using just water. Maybe Occupational Therapy at the hospital could provide some tips - some of it is the same as for stroke patients, it is, after all, a stroke of the optic nerve and nearby areas. The dizziness COULD be due to damage to the blood flow to the ear - a new study has shown that vertigo for that reason is common in GCA patients.
All I can promise is that it will, albeit slowly, get better. It sounds a long way away, but in a year you will all look back and it will be like a bad dream and you will see how far you have some. In fact, in 6 months it will all be very different.
In the meantime - we are here for any questions.
Thank you so much - it’s been such a hard day. My big worry is she is currently staying away a long way from home with me - she wants to go home and get into the system there but will be effectively looking after herself. I would like her to move in with me and get her treatment here and visit her home when she is well. Can you describe how frequent the checks, appointments are?
"get her treatment"? I'm not quite sure what you mean.
She will have a long term course of steroids, reducing the dose steadily, and many patients see their rheumy only every few months, The GP often takes the main burden even with GCA once the initial risk of sight loss in the other eye is past - and that is usually perceived to be well past after the first month, 2 weeks is the critical period.
I think your mother is being very sensible and pragmatic. She can't stay with you forever and it may well be easier for her to adjust in her own home where she knows where everything is. If you are really concerned you could investigate a home alarm, I don't know if the UK has the systems that use GPS so work anywhere. Some local authorities have them but how long it takes to get on the list is another matter. But there are private options and would give you the confidence she can call someone if she falls. OTOH, a small mobile phone she carries all the time with neighbours/friends numbers on it is another solution.
It is difficult to say how long it will take to get into the hospital system at her home so she has specialist care there. Have you contacted her GP? They will know more about the local situation and whether she can expect much support on the NHS or through the social services. Most is charged for these days though.
• in reply toPMRpro
A Doro phone has a button on the outer case so just needs to be pressed for 3 secs to call your ice number.
Also has anyone had any support from an Ocupational Therapist or received any benefits or funded travel? I can’t see her being able to drive for a while.
• in reply toTheSmartestGiant70
You need to speak to Dr surgery and try and get them to get the service sorted or ask the RNIB what the usual support is. If still under the hospital they should occ health her.
I don't know what the details are but this may help.
I gave you the link to RNIB in my previous answer so it might be worth speaking to them or your mother’s local council - social services department.
However I wouldn’t be too optimistic - as I said monocular vision is not regarded as being a disability - as I found out 7 years ago - and with the lack of funds nowadays I doubt things have got any better.
The DVLA recommend you give it about a month before you drive again - and so long as she can pass the sight test and feels okay she can drive. But it is difficult to start with - you don’t have the confidence initially - maybe she could go out with a local driving school or even a friend a couple of times.
I was lucky in that my late husband was around and could take up driving again for a few months - and then my son went out with me just to be happy I was safe. But THB I don’t think he would have dared say I wasn’t (joke!) - he would have if he though I wasn’t capable .
Hi...sorry to hear about your mom. The same happened to me almost a year ago at age 62. I had jaw pain and tongue cramping as my main symptoms. After waking up blind in one eye and the Emergency Room doc clueless about it, he spent all day trying to find a doc that did. Transferred to 2nd hospital and stayed 3 days on high dose IV pred. Saved the 2nd eye and some light came back in blind eye. The blind eye had continued to improve over time, but sadly, if I didn't have a good eye, I'd be lost. It's been tough adjusting to one eye, but I've learned by trial & error what to watch for. Uneven ground, curbs, remembering that my depth perception is off when grabbing for something...is annoying when I forget! Restaurant, someone holding out a cuppa for me to grab? I cup my hands and go around it. Slowly. Piece of paper or a pen? Kind of hard still, but I work thru it. Probably looks awkward, but I don't care. I've been driving! Doing great says hubby. Started on back roads here where I live, but I've graduated to the expressway/freeway here! So freeing!! My main problem now is still being on 22-25 mg pred., which makes eyesight fluctuate. There are days that my good eye is clear, but certainly not all days. Sometimes it's blurry 7-10 feet in front of me, but clear further out. That's when I really have to pay attention when walking! I have fallen twice. Daughter bought me "trekking poles" ...what people use for hiking. I use them on dirt paths. I love to walk the forest. They help with balance, lessen fatigue, and help me get the exercise we so desperately need while on pred.. Some gain a bunch of weight from prednisone, but I didn't. I think positive, eat healthy foods, exercise or at least walk everyday, and learn all that I can about GCA. I'll be starting on Actemra soon to help me get off of prednisone. I have a hard time with tapering...sigh. Happy you are here. Hope mom comes to see us too! Give her a hug for me and let her know it'll be okay!!
Thank you all so much - just to clarify the treatment she has been on from the start is the prednisone - 60mg and then starts reducing next week. She’s also taking adcal and some sort of acid and aspirin.
By further treatment I mean - blood tests, rheumatology - anyone checking on her GCA progress?
With PMR one should not reduce until the pain is gone. I assume GCA is the same. Usually that takes 4-6 weeks. How long ago was her dx?
Do you mean Alendronic Acid - for her bones? Weekly? If so, does she really need to? It is very often prescribed alongside Pred, but unless she has osteoporosis or is prone to it - it may not be necessary. She should ask for a DEXA scan to check her bone strength.
Very often a PPI - Omeprazole or Lansoprozole - is prescribed to avoid acid reflux, but it may or may not be necessary.
I had blood tests monthly, but really it’s the symptoms that tell you how you are doing, the bloods just confirm everything is going according to plan. Early days I also saw my GP monthly - and depending on how I felt and the blood markers we decided whether I tapered or not. It should be a decision between doctor and patient.
That is mostly done by the GP - blood tests initially are probably a good idea once a month before the next reduction is good to be sure that next reduction is a good idea. Most practices would have it done by the nurse and the GP will check the result when it comes back.
She will either have to be referred to the local rheumatology department or travel back to you but somehow I suspect the NHS will not be keen on that even if officially that is allowed - in England you can choose which hospital (and to some extent consultant) you want to go to. Not so in Scotland and Wales.
Where are you and where is she at home? Region/local hospital is what I'm getting at?
And I was just coming back to ask about the acid stuff - DL's beaten me to it! Not without a dexascan that shows it is needed now - it may never be ...
Thank you - I’m not really optimistic about practical support - would she be entitled to a blue badge?
Very unlikely - the BB - although new rules have just come into practice- is usually given on mobility grounds.
If she cannot walk further than 50meters without help (that includes a stick) she may be awarded one, but not just on the sight issue.
She seems to have a “woolly” head as she describes it - anybody else remember this?
I had a woolly head with 15 mg pred! That did get me out of jury duty. 
Yes,
Commonly known as Pred Head or Brain Fog! Can be attributed to both the illness and the medication.
This article relates to Lupus - but it does explain a bit about Brain Fog for people that have inflammatory diseases. You might like to read it and then explain to your mother that’s it’s normal.
It is common - but should improve as the dose goes down
I can’t tell you how helpful this all - I’m so grateful. What about the dizziness? And the moment she is struggling to get out of the shower alone as she’s so dizzy - does it go away? And does anyone use anything to make them stable getting out of the shower?
Also - she’s not a drinker really, but would like to know if you can drink alcohol with this condition.
And finally one for me - if she sees a rheumatologist- what will they do?
Dizziness should decrease as she lowers her dose - in the meanwhile she just has to do things as slowly as she can.
I’ve got a couple of rails in the shower - put in for my late hubby who was quite unsteady. You can get them from mobility shops - not very expensive - some can be stuck on the tiles, but a safer option is to get ones that are drilled on.
Might be worth using a walking stick just to steady herself as she gets out the shower - especially if she has to step from one level to another.
Most can drink with Pred, some can’t - but I must admit I did abstain when I was on high doses like your mother. Some find it a help - she’ll just have to try and see.
A Rheumy will just go through what’s she’s got, what she can expect, and probably give her a tapering regime (not always realistic unfortunately) - depends how good they are. They may want to see her periodically (appointments seems to very haphazard recently) - but a good GP sometimes is a better option than a bad Rheumy.
• in reply toTheSmartestGiant70
I use a stool in the shower if I am particularly wobbly. I usually use it after a quick standing shower and I dry myself sitting down and just allow the wobbles to settle. As DL says, grabs are useful then to help get out of the shower. Some people are reluctant to use aids. If she needs more support a Zimmer is useful. As the pred drops and your mum adjusts to sight the use of such things won't be needed hopefully. But a fall in the shower or house won't help matters at all. I use bathroom and kitchen aids for the various mobility issues I have from other conditions and am 58. They are not an age aids, they are mobility aids.
Thank you xx
Me again - it’s been a difficult evening - I think she did too much today - very tearful - she says she feels like she has “half a head” -does that sound familiar to anyone?
She must learn to take things easy - does she mean "brain" or scalp? It isn't something I've ever heard anyone say before. Was she checked for any signs of stroke at the time? That can also happen in GCA, the loss of vision is effectively a stroke of the optic nerve anyway but it can affect other areas.
By the way - you are probably better starting a new thread with new questions. Everyone will see a new thread but only those who are following this one see things that are added.
Half a head symptom. I had to think about that one. Right now? Yes, in a way. Hard to describe. I can feel my fingernails on my scalp, but there is a heaviness of sorts on the blind eye side. It's been a year tomorrow since my diagnosis. Perhaps this is one of those things I just don't notice anymore? I've also used my eye(s) more than usual today and my blind eye feels big tonight. Not the eye... but the area around it. Can she see anything out of her blind eye? Interesting to me in the beginning that it didn't matter if I closed my eye or not, I was seeing a gray to clear bubbly intricate pattern, as if I were seeing my eye innards at a microscopic level. I only see that now when going to sleep. During the day, the light I see thru the gray fog and one small clear sight spot, interfere with better sight out of the other eye. But now, if I close the blind eye, I don't see it. Might be time for a patch? Saw some really cute ones at a shop one day last year and hesitated in buying one. Should've bought it! At least for around the house...lol. At 22.5 & 25mg pred now. Good eye is blurry most days, but still get clear days sometimes. Foggy brain? Oh yes. Not as bad as at 60 mg for sure, but still there. Oh, and I turn on lights in the house even when others don't need them. It helps me a lot, since I'm only getting half the light in. Going out at night? Forget about it or carry a mini-flashlight in the pocket! More hugs for your mom and you too. 🥰
Like you - just greyness, but as you say the light coming in and the brain working is apt to make complete view slightly fuzzy at times. Probably more when I’m tired.
Definitely need more light indoors!
As for patch - my optometrist says - no. If you have light coming into both eyes, they are still trying to work as an item - and that may give you a problem as described- but to everybody else they look normal. If you use a patch, the bad eye eventually stops “following” the good and is likely to become like a lazy eye and therefore doesn’t work in sync with good one - so looks strange in appearance. Hope that makes sense.
• in reply toDorsetLady
Makes LOTS of sense, thank you! It's what I surmised in the beginning. Keep the eye working so it doesn't forget how...lol. Same thing, except I didn't think about the eyes moving together. I do appreciate that my eyes look the same as always, most of the time. The bad eye drifts a bit once in awhile... wish hubby hadn't told me that. I make less eye contact with people now. Shorter eye contact. Yep, probably more so when I'm tired.
Hubby might have noticed- but I doubt anybody else has! In fact if you meet someone new I bet they don’t even realise you can’t see out of one. I’m the same - sometimes I say if someone is sitting on my “wrong” side, I just say “I need to turn my head a bit more to speak to you because I don’t have vision that side” - and that’s enough.
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