82 yr old mother Blind within 3 days of GCA positive biopsy and while on 3 days of IV Steroids. Need info PLEASE

My mother is nearly 82 yrs old and was just diagnosed with GCA per temporal biopsy 6 wks ago. Mother lost one eye and with in 3 days even in the hospital on high dose IV Prednisone lost the other eye. Now my mother is completely blind. She also has always been very independent and is a widow and has lived alone for 17 yrs. Her life before blindness was Computer genealogy to which she did day and night, needlepoint and crocheting baby blankets. Now our family is at a loss as to what we can help mom learn to do using her hands and not her eyes. It has been so sad and really a nightmare for us all. Mom has been so depressed and cries a lot. She is on 60 mgs prednisone per day. We see tons of specialists. But now since she is on her 6th week of waking up in the DARKNESS we simply don't know what to do to get her involved so she does not think her life is over. We have hired 2 ladies that live full time with mom and take care of her. They are more like her companions now. We first came home with 24/7 nurses since mom was so distressed over this plus it caused her to also get colitis 2 times now and end up in the hospital 4 times since JAN. Mom has never wanted anyone to live with her BUT she is scared now and can't live alone. There are so many changes in our lives. It just breaks my heart that she can't see my face or her beautiful lawn and flowers in the Springtime this year. But we keep praying for our miracle. If anyone has any suggestions of how to help mom find things with her hands she can do I would love to hear them. She is not a joiner of groups and we wanted to make sure she could live in her own home. One last thing mom seems to get disoriented sometimes after the steroids. She has short term memory loss and sometimes talks out of her head. Then she is back to normal. Is this the GCA or the high dose steroids. Our DRS keep telling us her MRI's are fine that it is the meds that make her that way????

25 Replies

  • Big hugs and love to you all call RNIB from posts on here they can help .It is the drugs causing the problems she is so lucky to have you . I have GCA and what has happened to you mum is my biggest fear


  • Thank you Olive for your reply:) This GCA is the scariest thing I have ever seen and they say it is or can be genetic... I will forever be watching for symptoms myself. I was hoping it was the drugs making mom so out of whack and short term memory loss. That has scared me the most. Blindness we will get use to and can deal with...

  • Hi there,

    Feel real sorrow for your Mum, I lost sight in one eye, and can't imagine how I would have managed if I'd lost both. I guess from your letter you may be from America or Canada, but you should have a similar organisation to RNIB as suggested by olive. I would also agree that her other problems are related to the high dose of steroids, at that level they can be pretty severe, I know! The disorientation is probably also compounded by her loss of vision as well as her feeling of hopelessness.

    All you can do is support her as much as possible, try and involve her in everything, difficult because she may not want to at this time, and get advice from an association dealing with blindness. I'm sure, once she accepts her condition, and her steroid side effects lessen she will find she can do things. You did say she was very independent, and if she has that trait, it doesn't disappear althogether. Love to you and your mum, and hope you find the help she needs. DorsetLady

  • Thank you DorsetLady and Yes we are from America. This hit mom so fast. We thought she had the flu about a week before she lost her left eye.. Then even at the hospital before we knew it even on IV steroids she lost the other within 3 days... HORRIBLE... But with prayer and love we are all getting through. Of course at first she just wanted to die but I told her GOD was not ready for her yet or he would have already taken her....:) So on we tread.. All 3 of us kids live next to our mom so we pop in on her daily plus now we have a lady that lives with mom and she is mom's helper. Mom doesn't feel so scared now. She did very well today and said this is not gonna whip her. My mother is a pistol... I love her so.. Again thanks for your help. Vicki

  • I can also sympathise with your problem with GCA taking one eye and years on steroids. Two is totally unfair really and all I can say is you might also contact ITHELP@HOME or Dolphin software if Mum wishes to continue with her computing without vision. As a recent coordinator for ITH it was nice to see clients keep up with their IT at home and maintain an interest. Very best wishes and hope she will manage ok with the support you have set up.

  • Thank you so much raymck.. I appreciate the advice and will look into it for my mom...

  • I'm so sorry to hear your story and it is a fear many people live with once they diagnosed early enough to be given pred before it gets so far. had she had problems for long beforehand?

    By definition, everyone on this forum with GCA has at least some vision so you may not get a lot of suggestions - I'm certainly at a loss. However, a friend's daughter is totally blind and still is able to do many things although to be fair she did go blind in her teens which must make it simpler to master things and she had learnt braille before she loss her sight completely.

    Like DorsetLady I'm assuming you are in some part of North America - but there must be associations for the blind who can offer advice. An uncle had severe visual loss in his 70s due to glaucoma and continued to live alone - amongst other things he had a speaking microwave so he was able to prepare food but I really don't know how much residual vision he had. In the UK it is possible to access speaking books and newspapers - and I know that is also possible in Canada as I have a friend with RA that is so severe she can't hold a book.

    Because she has had sight you could try describing what YOU can see - she will know what colours and textures are. Some TV companies here in Europe have dual channel commentary for the visually impaired.

    Here is a link to the RNIB site


    with suggestions though how realistic they are for an elderly lady I don't know.

    ehow also has suggestions


    and there are many other pages there for you to explore for ideas.

    The confusion could be either the GCA or the pred - it can cause cerebral problems as severe as dementia but it sounds as if the doctors have checked that. Many of us, even with just PMR, have had memory problems but usually they improve anyway or as the dose goes down if it was the pred. I imagine she won't be on the very high doses for much longer, they are an attempt to avoid what has happened, and there is less need for that once vision has gone, other GCA problems respond to much lower doses than those commonly used in the hope of avoiding optic nerve damage so I would ask why she is still on 60mg.

    I do hope your mother is able to at least come to terms with this devastating change to her life - to all your lives. And I wish you all the very best in your quest.

  • No my mom had no problems before except we thought she had the flu one week before she lost her left eye. She was achy all over and couldn't hardly make herself get up in the mornings. She has sciatic nerve problems so we thought it was that. And she has always had migraine headaches for over 20 yrs. When we got her to the ER and the hospital even on the IV Steroids she lost the right eye within 3 days. Nothing could be done.... Mother was totally disoriented and scared... We are in America and the Foundation for the Blind has come to moms and given us great things to use if we get mom to use them... LOL All us kids live by our mom so we pop in and out daily. Plus now she is not so scared because we have hired a lady to live in with her.. Today when I went over she said this was not gonna get the best of her. There was plenty she was still going to do.. YEP that's my momma. Once she accepts the blindness she will be doing well... Thanks for your help PMR Pro

  • She does sound a feisty lady! The damage to the optic nerve was probably already done by the time she got to the hospital and, as many people will testify, GCA doesn't turn up with a big label saying what it is! Although what you describe is typical when you look back, many doctor believe it is the worst headache you've ever had and visual symptoms from the start - but it can start in other ways and by the time vision is affected you are too late. The guidelines for PMR, the stiffness and muscle pain she had, are that it shouldn't be assumed it is PMR until its been going on 6 weeks - and in the meantime the GCA can simply take off as it did for your mom.

    Anyway - all the very best. It sounds as if the worst is over and she is beginning to come round to the fact this is her latest challenge in life and not something to buckle under. Look after yourself too - it will be hard for all the family at first.

  • So sorry to hear about your mum i had tempory loss of sight 4 times and i was so scared, i was on 60mg pred but they up it to 80mg thats what im on now i had biopsy and was confirmed.i do alot of knitting im 63. Its so cruel

  • It really is a cruel disease. I am hoping mom will pick up her crocheting again. Many times I use to come over to visit her and she would sit and talk to me looking right at me and not at her hands crocheting a baby blanket the whole time...

  • Vicki, I am so very sorry to hear of your dear Mum's loss of sight to GCA. The others have already directed you to the RNIB who are the lead charity for those with sight loss in this country. If you aren't in the UK, I'm sure they will still be able to offer you email advice.

    It sounds as though you have a good support set-up already in place for your Mum - have you also considered counselling to help her over this difficult period?

    It isn't surprising that your Mum is feeling disorientated - both the inflammation of GCA and the high dose steroids, plus of course the shock to her system, will all be contributing to her confusion. This side of things will improve as the steroids get complete control over the inflammation, and the steroids themselves are reduced.

    Meanwhile you are obviously being a great support to your Mum - do remember to take care of yourself as well. Would love to give you and your Mum a real hug but hope a virtual one will help. xx

  • Oh thank you Celtic... You are so kind. I try my best and with the help of my brother and sister I am not alone in taking the best of care of our mom. Thank you for the info on the disorientation etc. That has scared me the worst.. Mom is still sharp as a tack but she has times she makes no sense at all. It comes and goes but I do notice it with the steroids... It is easier said than done to take care of myself. I am a very nervous person. Anxiety runs in our family. I can't eat so I have lost from 112 to 100 lbs. I am small only 5'1" and when mom got sick in January I just thought that was the end. She has been in the hospital 4 times already since January. Different things Colitis 2 times and reaction to Prozac another. She can't take any antidepressants which they were trying to get her to take to alleviate some of the side effects of the prednisone. We have hired a lady that lives in with mom now and mom is not as scared. I must say today was a good day. Mom was happy and said that this was not gonna get the best of her..... YAYYY

  • Oh dear, your poor Mum. Yes do get in touch with the RNIB or equivalent. One of Mum's friends went blind gradually until she lost her sight completely in her eighties. It was not GCA. She continued to live alone with help from a wonderful neighbour until her death at 96. As she has always been so independant your Mum might feel a bit better if she could do more for herself.

    Mum's friend had a clock which talked when you pressed a button, a device which enabled her to make a hot drink in a mug. It made a noise when the mug was full enough. She could use a microwave where the buttons had raised dots or symbols on them. She also listened to the radio and audio books a great deal. She put different numbers of elastic bands on her medication for diabetes. The local branch of the RNIB gave her so many tips on how to cope.

    Hope things improve soon.


  • Thanks Pat M I am finding that you are correct and the more mom does for herself the better she feels about herself. She has a lady that lives in with her now and I told her to let mom be as independent as she can.

    Mom finally had a good day today. I think she is coming to terms with her blindness...

  • Hi, I can absolutely sympathise and understand what you are going through, our mum lost her eyesight to this condition literally overnight at the age of 88 although she has some vision everything is blurred and she cannot see detail, she too is unable to see enough to do the things she enjoyed such as knitting, word search, reading and watching the television. We have had a year to get used to it but it has been an extremely difficult time for everyone, mum had to give up her home and go into residential care she was initially coming to live with me but mum's mobility and confidence rapidly deteriorated and she decided this would be the best option for her.

    Mum had a mental breakdown whilst on the high dose steroids, she started talking to herself in the bathroom, became very anxious and was having really weird thoughts, the GP confirmed the symptoms were due to the steroids and she was put on antidepressants and for a short time Valium. She still needs the antidepressants even though her steroids have reduced to 1mg, I would definitely keep a close watch on your mum as what you say sounds familiar. We are in the UK and as mum is registered blind the local blind association have given her a radio designed for the blind with big buttons, she also has a speaking clock with a button on the top.

    It is so sad and devastating to be faced with this unfortunately at their age much harder to introduce new skills, however as your mum appears to have been computer literate there may be apps available that speak. Hard as it is for you all try to focus on the positives you have managed to keep your mum in her own home albeit she needs a lot of help. Our mum doesn't come out of her room in the care home as she feels she needs the call bell to hand, we visit every day but in between times she only has the radio and an occasional chat with her carers the rest of time she spends sleeping and thinking about the past and present. GCA is such a cruel disease if only we had been aware of the symptoms, it affects everyone not just the person who has been diagnosed.

  • I know in some homes the patients can also wear call alert buttons round their neck. My mother-in-law lived with us but if she had fallen or been taken ill in her granny flat in the house there was no way we could have heard - Scottish houses were built very solidly and you couldn't hear from room to room! With a great deal of difficulty I persuaded her to accept using a call alert service who had us as the alert number. I have come across a few residential homes who either have something like that themselves or happily allow the resident to have one and act as the alert number so the resident feels more confident to go outside their room.

    Of course my MIL would leave hers on the coffee table or the bedside table at night if she went to the loo! My mother, on the other hand, never took hers from round her neck when at home! But it gave her the confidence to live on her own for years after having a cardiac arrest while on holiday in Germany.

  • 4sibbs you are so right and it effects the entire family and is a very cruel disease and quick... I will remember you mother and your family in my prayers... This is the hardest thing we have ever gone through.... Love to you and your MUM we live in AMERICA... Vicki

  • I see you have had several very good reply's to your sad post regarding your mom's vision loss. I worked for 10 years as a vision rehabilitation nurse with the CNIB in Ontario. For five of those years I specialized in gerontology and my focus was the senior population . Home visits , tools and strategies were provided all with the goal of ameliorating the affects of blindness and vision loss. Agency help can provide information and offer tools for support but in the end it is the inner strength of the person affected, the wisdom of her age, and the love, support, and understanding of family and friends that will offer the best outcome. When a person looses their vision at any age, "acceptance" is an ONGOING process. I can say unequivocally in my experience, that the most effective support provided by the agency beside the initial information/guidance stage was the "Peer Support" program provided entirely by people (volunteers) who have suffered vision loss &/or blindness. Give yourself and your mom time. All the best


  • Thank you Betty... Mom was in a wonderful mood today and told me this was not gonna keep her down. We live in North America. I do believe with our prayers and mom's independent nature once acceptance has been had she will do well especially with her ladies we have hired to live in with her.. They keep her entertained well and here in America The Services for the Blind have been out to help us. They have sent a talking clock and a walking white cane and an audio player and audio books.


  • I am so sorry that happened to your mother. we all I've in fear...trust me. I do know that Apple has features on the Mac that speak to you and that are designed for someone who is blind. if you go to your nearest Apple store they could help you. I bought a Mac for that very purpose but have not had to use it yet. Hope this helps.

  • Thank you so much for this. I am going to look into it for mom. She would so love to do her computer work again. For now I go up once a week and I am the eyes on the computer and my mom is the brains and together we continue our genealogy search... :)

  • I forgot to mention that Siri can do a lot of things on the iPhone. My daughter has her send all her texts and e- mails . She just dictates what she wants to say and Siri plays it back to her and then she just says "send" and off it goes. Your mother and I were not born in th tech age but we can learn .

  • I Forgot to say yestrday have dyslexia and have a program called Dragon naturally speaking on my laptop being using versions of this for 10years . That will give your mum freedom to carry on her research

  • Hi, so sorry to hear about your mum. I was diagnosed in January this year with GCA, am on very low steroids, too low, I and a few of my replies, have said. Sorry, can't be much help to you, but I do seem to suffer with terrible memory, things that I've just done, I just forget if I've actually done them or not. Really don't know if it's the GCA or steroids, though they are low.

    I see you have a lot of replies, sorry I can't help, but if you ever want to moan, am here :-))

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