On 9/11, I saw the neuro-ophthalmologist. I've been on 60mg a day since August 11 after three days of 1250 mg infusions. My left eye went dark August 2019 and at the end of July 2024 my vision seemed 'hooded' and a dim area or room was black. The neuro ordered the infusions, and he usually NEVER gets involved with prescribing pred, " That is for your rheumatologist."
I'm struggling to maintain a positive attitude; I feel the lack of control, which I usually can muster. I see my rheumatologist this coming Monday. With this dosage, I'm fogged up, hard to focus, then it gets better late afternoon or supper time. I did lose some peripheral vision in the right eye (upper right and lower left), and when I saw the neuro, the whole eye chart was just fuzzy...like everything is all day, every day, with all this prednisone. He had me look through the eyepiece with the tiny holes and it wasn't much better.
I'm really complaining...I don't like 60 mg, right? It sure has changed my QOL, but I can see...it just isn't clear. Do I want the rheumy to reduce the pred, not if it will have a negative effect on my vision? I tell myself how fortunate I am...and I know I truly am...but, I guess I've lost confidence...in me? in my rheumatologist? The neuro-opthalmologist I saw last Wednesday said, "Some people can maintain on 100mg daily, but the optic nerve swelling has decreased, and it seems 60mg works for you. " My mouth just hung open....seriously, this is it? And then I said a swear word and apologized, and he said...you can say that....so I said a worse one...and he echoed it and said yes, you can say that too. Yes, I dropped the bomb!! He will send his report to the rheumy. Maybe it is the anxiety of what will come Monday?
Maybe someone could teach me how to write a short post. I was going to wait until Monday, but I had to talk to the only people who really get it. My OH has dementia. He is a good guy, but he is so unsettled by anything negative while on his journey, though he is so helpful and kind. Tag...you are it💞💞My talking out loud, thank you.
Written by
Grammy80
To view profiles and participate in discussions please or .
Hi Grammy, sounds like you feel you’re lost in a frightful maze. You know it’s all the high dose pred but the struggle is dreadful for you going through it. You are always eloquent and your humour is there in spite of everything! I’m no expert but I assume the 60mg is short term to save your sight and you will come out the other end. Sending you love and all good wishes 🌻🌷💐
Yes, I feel like a hot mess. Today I got up at 5:00AM, took my meds including the pred and went back to bed, slept until 9:00AM. I was hoping clarity would come earlier but after breakfast I felt so tired....but I had two cups of caffeine laced coffee......but I'm done now: it sure perked me up and blew the fog for about 2-3 hours.💞
Don’t ever worry about a longer post.. as PMRpro has said, you need to say what you need to say. And if you cannot do it here, then where?
Can understand you are are reeling and finding it difficult to maintain your usual optimism - but some of that is likely to be the side effects of Pred, not belittling your concerns in any way [how could I, we have so much in common, GCA wise]. But we know Pred can affect how we think and can have a very depressive affect especially at high doses.
I know you aren’t just thinking about your own situation, but your OH as well… which makes it doubly difficult - but as you know, you can offload on here when you need too.
We may not be there physically to help, but we will support you in our own way.. sending hugs and best wishes - as always… 🌸
PS - re swearing - as my late hubby used to say, better to hear a few swear words than be deaf!.. mind you, that was coming from an ex military man, so it probably doesn’t apply in polite circles…whatever they are!😳
I can feel the hug! When I came home from the neuro appointment Wednesday....I just thought I'll do my usual thing, sit and reflect, count my blessing and adjust my frame of mind. I think you are spot on...the prednisone stole the tools I usually have at my disposal and as I continued to tell myself I was so fortunate, and I know I am, I just didn't feel it and funked. This is a home to me. xo💞
PS What I said certainly was not for polite circles...it just came out and the doctor seconded it. Your hubby would have been proud of me and known he wasn't deaf.
I think that post was quite modest for high dose Pred standards. Anyway I think it is the law that long posts are obligatory when you are on 40mg or above 🙂
Setbacks are horrible and 60mg doesn’t help trying to maintain a serene and philosophical mindset one bit. More like a fuddled brain and wobbly bottom lip, with tears not far behind.
60/40mg made my eyes quite squiffy and it was nothing to do with the GCA. The trouble for you is you don’t know what will come out in the wash yet which is scary. We’ll be rooting for you!
I knew all of you wonderful people would help! It is reassurring to hear that 60mg can do that TO me....I really don't remember my initial years on high doses much, it's a blur. It is so helpful to hear your words....'tis true, I think it is the unknown. This will be the first time I won't trust a decrease in Pred! xo💞
Grammy, I'm so sorry to hear of these recent developments. Write as often and as lengthy as you need so that we can enter your space and be with you as much as we can. I don't really have any words of wisdom other than to say what was on my mind as I read your post....
None of us knows what tomorrow might bring, and the older I get the more I realize that my days are both numbered and going to be full of surprises -- some good, and some not so good. I cannot imagine being blind, as none of us can. I also cannot image having cancer, or losing my wife or child, or being paralyzed due to an accident, etc. Yet these things (and worse) happen to all of us on this side of heaven -- and as for me the only thing I can do with the situations I find myself in is accept them and try my best to endure them with as much grace as possible.
This seems to be precisely what you have been doing all along, Grammy, and in the process have been such an uplifting encouragement to all that "know" you.
So, so true, thanks Montebello....we don't know. My neighbors work and have young families so I've never made friends in the neighborhood. I've always been friendly and thrive on interaction with people, even strangers. I talk with my friends in Maine but it isn't the same as talking and sharing with all of you. Plus, now I'm not driving and don't go to the Senior Center for art classes or crocheting and my eyes won't let me paint or write my book...not that I really feel like it. Wha Wha Wha.....thanks xo💞💞
I hope you have some help coming in for you both and have a driver for your appointments. I am hoping you can come out of this soon! Love to hear from you.
With the surgery last year, I did have help three days a week. The only thing I'm thinking of now is a gal to come in and do some cooking and freezing; previously had ordered very tasty nutritious meals too. Can't recall where right now....We'll see how the Pred dose goes. Larry has become a quieter person, on Aricept, unless he wants to tell a story...and I listen. So it is working well. Thank you💞
Indeed. This is the place to express yourself, no matter what. Even people like me who have not experienced high dose pred can relate and commiserate and let you know you are not alone. Here's a virtual hug from me, and wishes for better days to arrive soon! So good that your medical people are on top of things, even though the treatment is not so pleasant at this stage. 🤗
Thanks, I thought of that...I always express my value for the forum by saying 'you are not alone' and so all that was running around in my head, I knew I could share. The neuro said I would be 'prednisone reliant for the rest of my life.' I guess the ?? is, how much....I can only use my eyes for a while and they burn, though I use Rx drops and Systane. I've listened to some wonderful books.💞
Oh my dear Grammy, of course you are feeling low, I was very strange on 60mgs and my sight was affected, couldn't focus properly and lost balance. You have really been through it lately and deserve to sound off about how you feel as much and as long as you like, especially here. You are so supportive of others and it is a privilege to offer a little back to you. ❤️ More hugs coming your way🫂🤗
🫂🫂Got them! It just feels so good to 'talk'....besides the uncertainty, the 60mg makes me certifiably strange!! Yes, the vision, balance, and I walk funny...nothing is like it was....but I'm experimenting again with ways to counter my brain fog...no drugs or mushrooms!! As I read the encouraging posts and kindness and as I 'talk' with each of you, I'm better able to identify that is the uncertainty and the root cause of how I feel, not that I feel particularly able to do much about it right now. 💞
Thanks so much, it is a sure thing I did the right thing by posting; it has helped. I cannot imagine where I would be without this forum and all of you. xx First I thought I'd wait until my visit on Monday....but I needed to talk and I knew it would be long.....but this is the best place for me. Now, I'm even comfortable with long~! Thanks for the hugs💞
Just adding my well wishes and hugs to you! You help all of us as, hopefully, we help you. Let us know how your Monday appointment goes. You have a beautiful spirit❤️
oh Grammy, I’m so sorry you’ve been feeling so down. You have every reason to - although I know and appreciate that you always look on the brightest side available 🤗🤗
It’s 2 am here so I can only say I agree with everyone else here and send you love and hugs. Take care of yourself dear Grammy 🤗xxx
'Down' isn't a comfortable place for any of us with the unknowns and uncertainties. I got the hugs~! There are still unknowns...could it be 60 for the rest of my days? If so, and I can see what I can see....I know I will get to grateful. xxx💞
So sorry you have to go through such uncertainty.I think you are very strong but it's hard with the unknown.We ve all been down at times and yes I swear too.I just say it's ok when I have reason.Let us know how you make out and talk as long as you want.It helps to reach out.Hugs to you ❤️
Don’t you EVER feel feel the need to apologise,you are here for people and now it is YOUR turn.You swear as much as you like,a release for you and for many of us.The journey you thought that was coming to a “ nearly” end has come back to bit you on the bum,and you have every reason to feel low,frightened and lonely.Wish I could jump on a plane and give you a very massive proper hug.You like me have the extra worry with OH and dementia,and sometimes we do not give ourselves the care and rest that we need do we?Please remember that we are all here for you,thinking of you and wishing that we could do more.Please don’t lose your previous positivity,the pred is doing all these crazy bloody things to you and you know as well as we all do,Mr Stress LOVES it when we get up tight.No consolation to you at all,but spent all of Thursday night in A and E with OH,ambulance in ,as extremely high BP, heart issues.Felt stress on a level uncharted.Dreading the worse for him and me flaring but reasonable on OH s part and no flare for me as yet!Dont drink hardly at all but poured the biggest whiskey and coke in the world and quaffed it!And as for really bad swear words don’t you worry,better out than in!When the awful, awful consultant who came and saw me when I was in hospital with the GCA and sight loss told me in a manner that was off the scale I was blind in that eye and it wasn’t coming back,I screamed at him to get back to my bed and basically show some compassion and explain this to me .And do you know what?Maybe it was the infusions of pred ,but I called him a c………..,!Not a word I would EVER use but it made me feel heaps better,made him look an absolute twat .Good old Mr Pred!He comes in useful sometimes.Anyway,my short reply to you is becoming War and Peace so you just try and chill,be very kind to yourself and why not get yourself to your centre in a taxi,even if you can’t paint at present,the company would do you the power of good.Love to you dear Grammy ,xxx🐈🐈🐈🌹🌹🤬🤬🤬🤬🤬🤬🤣😜
I hope your husband is doing alright now. What diagnosis did they give him?
Prednisone is a friend; where would so many be without it? I've always been grateful for it and willingly took the side effects to be able to treat GCA. Look at DorsetLady, who, though it took seven years, I believe, took only pred and then developed a tapering plan that has helped so many! Her life is full. My emphasis was always that we could support each other....but for sure..there was light at the end of the tunnel. It is just right now. My tools are not with me, and my mind isn't cooperating. I still have the forum, which is a great source of strength for all.💞
Morning dear Grammy,hope you are feeling the love from us all and it is giving you a bit of strength?Good luck for Monday,we are all sitting on your shoulder!OH is doing ok diagnosis of Pericarditis,lots of antibiotics going on,anyway,you just worry about yourself ,do you hear?Love and a big squishy hug.xxxx❤️❤️🐈🌹🌹🌹
Grammy you are so resilient, like the pioneers going out west on their wagons, facing all the trials and tribulations they must've encountered on those journeys!! I'm definitely adding my hugs 🤗🤗 to the hugs from around the world already keeping you well and truly hugged 🥰❤️
Hi Grammy, so sorry to hear of your present troubles. Monday may bring surprises but I'm sure you will cope with them in your usual amazing way with and/or without the swear words. Everything I could/would say has been very well said by all the others so I'll add my best wishes and many hugs. 🫂🫂🫂🫂🫂Xx
There’s nothing I can add to the comments above. Just wanted you to know that so many like me, will have read your post and been so understanding and sending hugs even though they haven’t written. Thoughts and prayers are with you especially for Monday. xx
Grammy,Perhaps the services for the elderly in your community includes volunteer visits. Is that something you would be interested in or would it just be too much to handle?
Grammy, I am rooting for you and I will think of you as I go about my business today!
Hi Grammy80 so sorry you're feeling so down. Can't say anything that hasn't already been said but sending love and big hugs and please let us know how you go on Monday. 💖💐
That wasn't a long post , it was meaningful.Many of us haven't had it as hard as you with GCA or the vision loss , most certainly will not have had to endure the dose of steroids you need, but we can all empathize with that feeling of losing our control and losing ourselves.
To have to cope with helping your OH as well as going through your own nightmare will understandably leave you feeling numb and lost for thoughts of what to do , even without enough steroids to floor a grown man.
I just want to send you my love and admiration. Considering all the obstacles you have been going through for so long you still speak with such clarity and bravery , still try to remain as positive as you can no matter what horrors are thrown at you. You certainly inspire me in my darker moments , just as I'm sure you inspire the rest of the forum.
I hope you get better news soon. Please don't ever hold back , we are here when you need us , post as often as that need arises. Getting those feelings out is necessary in these hard times. Hugs , Bee
Thanks Bee, I felt like I was complaining but as I thought of all so many have endured with PMR and GCA, I realized that posting my feelings among people who understand all the nuances of these diseases....would be talking to friends. We will see what Monday brings and that will have to set me on another footing...I think it will be the first time I don't want the steroids cut--in one way--but cannot imagine staying on 60mg. I do know I ultimately will have to find a way to deal with it.....who knows? I'm not certain what I would defifne as 'good news.' Probably the pred talking....I appreciate every one of you.💞
Dear Grammy, I have only just now caught up with your post (Daily Digest a day late again) and have loved reading the many warm and wonderful responses. I am comforted to know you are comforted 💗. People we have never met and who are on the same wave length are a ‘cure’ in themselves and a blessing. As I write you will be sleeping - I think? I hope you drifted off smiling under a blanket of warm wishes and will feel ready to meet the new day and any challenge that presents itself. xxx
Most of you are six hours ahead of me...and I'm pretty sure you are sleeping. I'm always behind but try to keep up. One of my sons and his family lived in Prague for five years....so, the closest I've been to all of you physically is Heathrow, huge Heathrow, eight times. Mentally, I could not feel closer to all of you...this is therapy for me and yes, lots of encouragement and hugs. Do all of you realize how close and intertwined we are? What a gift💞💞💞💞
You mentioned writing a book. How about recording thoughts as they come along. Getting things done will make you feel tons better. One of your friends can transcribe from a voice recorder - you probably have one on your phone or there are cheapies on A.
And there are programmes that do it automatically on your computer - don't even need a secretary except maybe to check the offering which occasionally can be amusing if you didn't train the dictate programme well!
To Petros-1931 and PMRpro . I've started the book which is Mom Goes to Moscow 1991. I did, my son was studying Russian there for his final college semester and I visited for two weeks. Total culture shock ! Yes, Pro...can make some interesting and titilating errors.x I kept a daily diary, but I can't focus my brain..see the words I wrote in pencil in 1991...then the burn. I do have a microphone and hope to do it soon. It is important to me to finish it for my son who is having it bound. There...I have a goal.💞
Dear Grammy80, I hope you are feeling the same love and support that I am reading in these responses to you and that our caring community is seeing you through this horrible time. Sending you a huge hug xxx
Joining in late, Grammy… and adding firm hugs and a sprinkling of shocking swear words for good measure. I can empathise with you, my second GCA flare came about 9 months ago when I’d reached 2 mgs Pred - back up the ladder to 40 ( they wanted 60 ). Of course I don’t know but I can’t imagine you could be kept on 60mgs indefinitely? (I’m sure someone will put me right). But, meanwhile, love and solidarity. X
That is just what I get anxious and conflicted about.... Frewen1 60mg indefinitely is hard to embrace, but then again....I'd sure do it to see. So, I guess it is no contest after all.💞
dear Grammy please do share your fears thoughts and disappointments in this safe place. We’re all human beings in this crazy world with fears and anxieties . People who do understand, have empathy and wish we could hug you.
If you need to cry then you really must, it’s hard to cry but often it’s a blessed release .
Your OH is on his life journey with your support, he must have his fears . You exipress your fears and disappointments here with us . They’re not negative Grammy the longer the better.
So kind....I did cry today and it is a release. Yes, my OH is fearful and I do all I can because I see it in his eyes; he knows his limitations. I will watch a Boris Karloff movie with him tonight, his favorite. It is such a blessing to be able to just talk....through typing to all of you....it felt so indulgent, I hesitated. But...there you are, all of you💞
The mental health benefits of cussing and swearing are well documented. Ditto the analgesic effects in the face of pain. You sound so overwhelmed and I am not in the least surprised with all that going on. You have every right to be fed up. But it's always better to let it all out than hold it in and this is good a place as any. I hope that you can feel better supported. Is your GP any good? They ought to be fighting your corner for you. It sounds like what you need is a good ally right now. Also, I wondered if there are any local support services who can offer you some extra help and that you can make use of. It was a big surprise to me when I came out of hospital recently that a local charity called me the day after my op because I live alone, to see if I needed any help. I didn't, as it happens, but it made me realise that there are a lot of organisations that offer all kind of help and support, it's just a case of being able to find out what is out there.
I don't want to dirty up the forum typing...but if you think you hear someone with a foul mouth...it may be me. For the most part, I'm happy with my doctors though my confidence in my rheumy is wavering on a few points. The neuro opthalmologist never prescribes the steroid...but he sure whipped me into those infusions...and I know he was displeased...that vision was lost and I feel unhappy with the rheumy. Plus, PMRpro pointed out info contradictory to what he told me...and she was right. I'm so glad you were contacted when you got out of the hospital... services like that in the States are $26USD per hour and I've had them in the past. That was the cheapest I could find. Now, I think my issue is not something a charity or $$ would help, it is the drug and the eyes.....I'll come through this I know💞
I am late to this post Grammy but wanted to say how all your posts, even this one have sent hugs to us all in one way or another. Are there many on here who do not have a good swear from time to time? Some maybe under the breath, but not all.
As one who provides a lot of support with your positivity, I am glad you have been able to sound off on here. We all have off times, and you have had a lot more than many to contend with lately. Please accept my hugs with all those sent already. Will be thinking of you on Monday.
I'm so sorry you are going through all this. My question is not as pressing as yours. I woke up with extreme pain in my right eye and tearing. I had this before and ended up in the ER with no ophthalmologist available. I saw one the next morning and she said I was ripping layers off my retina. I was told to use Muro 128 which I do every night. I just recently reduced my prednisone to 3mg from 3.5. Do you think my present dose is causing this pain? I don't have the symptoms of GCA after googling it. It's only pain and tears. Should I be concerned? Of course, it's the weekend so I can't call my ophthalmologist. I love the comments you received. There are so many caring people on this site!
Oldies60 Every question is pressing and important. Can you get to see an opthalmologist? Definitely a specialist, I would say. The retina is in the back of the eye...I'd want to know why and how that is happening. Did he name a condition? I've had issues with dry eye...after having drops, the same med was prescribe in ointment form which I would put in at night....didn't hurt at all. I would pursue this ...it doesn't seem the pred would cause it..especially with the info you were given about your retina. Please keep us posted.💞
I was told it was just dry eye syndrome from the prednisone. I saw a retina specialist too. She prescribed xiidra. It seems fine now. I will definitely call on Monday if it comes back. Thank you for your concern.
That is great, and Xiidra is an excellent med; I use it also. My health insurance refused to pay for it the first time and substituted Restasis, which is fine for some, but I had an allergic reaction. Then I got the Xiidra, morning and evening, plus I use Systane throughout the day if I need it. My ophthalmologist has me use Brimonadine to maintain low eye pressure even though I stay around 18. I'm so glad; it is irritating as can be, but we can keep them 'wet'...terrific.💞
I don't use the xiidra like I should. It burns real bad when I do use it. I used restasis when I wore contacts. That didn't seem to help either. Even my dr didn't like it or think it helped his dry eyes. I guess I should get better using the xiidra. When this first started happening I was using eye drops constantly. Using the nightly lubricant seems to really help so I don't know why it happened today. You're lucky insurance paid for your drops. Mine were almost $300. So do you have glaucoma because you're having eye pressure problems?
I sure appreciate your responses. PS Big hugs to you!
Granny, just the other day you helped me so much when you replied to a post regarding my husband. I am sorry you are going through this. I understand the swear words, I have used them frequently since my husbands set back last week. You will surely be on my mind all weekend and wishing you the best on Monday. I know you have received many hugs, and I am sending you another one.
Nothing to really add to all the above comments, except your description of life as you know it, is so fluent and full of sensitivity and humour, that surely you must write that book! I would so love to be able to give you a hug personally, have a glass of wine and see if I can outdo you with swear words! We all get down but you do have a wonderful capacity for life, keep a diary so that when you are ready for the book all the work will be done!
Oh my Grammy. So proud you dropped the f bomb. 😆 Sometimes it just says it all; coming from one who uses it quite regularly. Even during your hardest times, you're an inspiration to all of us. Hang in there. Huge hugs! 🫂
Oh, they do...all of you do. This forum was my strength in 2019 and continues to be. However things were going, it helped me to be able to encourage others and I feel the love and hugs💞
I just wanted to say goodnight to most of you....it is 1:00PM Central Time and I just woke at noon. Thanks to all of you, I felt less stressed but was still up at 2:30AM. I set my alarm for 5:00 AM so I could take my pills. Well, I got up at 5:00 AM, did my thing but never took my pills. DUH~! I returned to bed and slept soundly until noon. I'm sure that didn't hurt...but my 'highly wired time' will be off.
Talking with you is like a huge embrace.... By the time I come back to the computer....You may be in bed. xoxo and then some. You are all so very wonderful.🫂💞
Hi Grammy, so sorry to hear what you are going through. Life really does chuck stuff at us doesn’t it? I hope your Monday appointment goes well for you and you get some answers. Sending big hugs 🫂 “this too shall pass” x
Hang in there Grammy. You were one of those who supported me so kindly on this forum when I was diagnosed with GCA in february this year. Early days still for me, tapering OK, and thankfully no eye issues, so I know I'm lucky. But I do wonder if and how this may hit again in the future. It has now happened to you and I'm so sorry. You know 60mg is right at this time, do try to be strong and reach out to this marvellous forum any time. We are all here for you. I am bouncing back to you all the kind words you sent to me.
One of my concerns, as I've 'talked'....is that I don't want anyone with GCA to think 'I'm typical.' DorsetLady and I mirror the story of undiagnosed GCA for an extended period. It seems it hooks into you. Maybe she and PMRpro, our resident scientist, can address it. My positive attitude has come from walking with GCAers and knowing it takes time, but we get better. Plus, I developed optic neuritis and neuralgia. I don't want this to scare anyone.
Slow, slow, and slower....I'm thrilled that you are doing well with your taper. Through the past five years, I would ride that roller coaster of getting to a new low to find myself having to go up for a bit. The big picture for you, though, is you are going downward if I wasn't feeling quite right....I'd stay on a reduced dosage a bit longer...to feel secure. I know. What words can describe this group? Awesome🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑💞
Will it hit you again in future….with GCA probably less likely than PMR, from what I’ve read on here, but maybe because there less people with ‘just’ GCA. But you can never say never.
I always say [and think] my GCA is in remission..just turned 8 years on that score… to be honest I rarely think about personally.. but obviously I lost sight so that’s a reminder at times and I’m on here most days, so I am fully aware of it. I know what symptoms to look for, and I’d been down the GP surgery faster than the speed of light if I suspected it.
Hi Grammy80. What a shitful time you're going through (wonder if the "powers that be" will let that mild one through?). My sympathies from Down Under are with you for sure!
As another GCA-er who has not long ago had a massive flare and had to go back up to 60mg (I'd made it nicely down to 5mg), I can really empathise with the Planet Zorg effects of high dose pred. They're horrible aren't they! I also remember first time around when I had the IV pred too (1gm a day for 3 days), that I was a total nutcase because of the pred, aside from the stress and uncertainty of everything.
What most distresses me about these high dose effects is that I don't feel like myself and feel somewhat out of control or removed slightly sideways from reality. Brain fog, wobbliness and constantly physically shaking aren't the half of it. It's hard to explain, but I'm sure you will understand what I mean, and the difficulties it creates in maintaining some semblance of a "normal" life. Whatever that might be in any given minute!
I can really sympathise too that these things always seem to happen when there are other things happening to add to our stress levels. In your case having an OH with dementia is cruel enough without having your own worries as well. I really admire your fortitude and humour, even when feeling wobbly. You're my hero!
I hope things will work out for you and that your pred dose can be reduced soon. Once the high doses have done their job in bringing down the inflammation, my understanding is that a lower dose can serve as "maintenance" more easily. So, fingers crossed, even if you need to stay on pred indefinitely, that it can be at a much lower dose. I really hope that's the case for you! Big hugs.
Oh, what a 'shared' post, indeed. Planet Zorg!! Perfect description! My son came to visit today at about midday and later returned with his wife to visit. I know he was disturbed by the shakiness and wobble-walk...he is 63, and Moms go on forever, you know. His first observance was, "Gee, you aren't quite as bad as a few hours ago." But that is the nature of the heavy load...when and how it hits and for how long. As PMRpro pointed out...I'm not 60 anymore and turn 84 this week.....so I think the effect on my tired body is greater; or I'm sure kidding myself. Today, I set my alarm for four AM, took the mighty pills, and went back to bed, hoping to sleep through that punch-drunk stage.
Yes, I understand precisely what you are experiencing. I got to zero at the end of June after five years...but it only lasted a month, and I was in the hospital for infusions and two weeks later for three consecutive days of infusion, 1250 per. That knocked me on my keister~!
Tomorrow, I see the rheumatologist with a mixed bag of emotions. Yes, I want to taper, but I don't want to risk my only eye. When on this high dose before, the taper can be great as you know...but having lost a bit of my good eye....I'm not sure how much I want to gamble. It sure does kick normal life in the butt~!!
I've never wanted to be part of the 'get to zero' club, and my taper was slow and steady; there were no hitches. I see pred as a tool, and the neuro-ophthalmologist says I will be prednisone-reliant. That's fine with me, but he said I had 'good control on 60.' He sent his report from last week to the rheumatologist, and I see the neuro in three weeks. I love seeing him because he sees into and behind my eye, optic nerve, and disc.
I know I shall have to work with what 'the powers that be' dish out. You are a younger chick and hope that things will quiet down for you...slow, slow, slow. Thanks for your good wishes and thoughts...right back at you, Matey.💞xx Stay in touch💞
Thanks for your good wishes. That's most kind of you.
I hope the visit to the rheumatologist tomorrow will be a useful one and that you come away feeling a little more settled about everything. Fear of losing sight in your remaining eye is a biggie, so I hope some clarity there (pun unintended) will be forthcoming to ease your worries a bit.
Others have mentioned it above, that the high doses of pred cause their own effects on vision apart from what the GCA is doing. I know that one well as my version of GCA didn't have a big visual component, but the pred sure made my eyes do weird things at times. So perhaps your lovely neuro-ophthalmologist might be able to separate out what's causing what a bit for you ?
The uncertainty is the killer though isn't it. The way I see it, when we get to our stage in life, by and large we've got things (usually!) pretty well sorted, so it comes as a 'bit' of a shock to be bowled over by an unpredictable illness on top of dealing with all the other curly 'delights' that seem to accompany getting older. I guess it keeps us on our toes so we don't get too complacent, but I figure a bit of complacency and predictability would be rather nice occasionally! But only occasionally – I don't plan on eventually popping my clogs from terminal boredom either… 🤣🤣
Fingers crossed for you that your birthday will be a joyful one, despite all that's happening at present. Have a good one! I'll raise a glass of something celebratory in your honour!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can GCA lead to PMR and what are the symptoms?
My 7 Month Nightmare With GCA?
