I know none of you can make this decision for me but I'm looking for some input from the people who have walked this GCA walk with me for two years and educated me as well as made me a better advocate for myself.
After two years last month the rheumatologist and I agreed to taper from 20 to 15mg of prednisone per day. I've only gotten to 10 twice and then flared. Dropping to 15 for this past month, seemed uneventful with the exception of two days with intermittent pain behind my right eye. You may recall my diagnosis came only after losing sight in my left eye.
On September first, I had an appointment with the ophthalmologist and after testing, the visual field test showed that between June 29th and September 1, 2021, I lost 26% of the vision in my right eye. I see the rheumatologist next week and we will be talking 'turkey'. Last month's visit was the first time he ever said we have to weigh the cost/benefits of prednisone, so we tried.
I'll be 81 this month and after a lot of thought, I have decided that I want the best shot at retaining my vision...even if it means going back to 20mg. I believe I can find the side effects of pred easier to live with than to lose my sight. 💖💖
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Grammy80
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Good morning Grammy80. So so sorry to hear about the partial loss of sight in your remaking eye. 😭. I can not comment as a GCA sufferer as fortunately I have managed to miss that one so far. My own philosophy on life, certainly regarding use of medication is that quality of life is the key. As a mere youngster of 72, for me, personally, if taking 20mg of Pred meant that I kept the sight in my one remaining working eye then 20mg of Pred it would be for however long it was needed. Big hugs and best wishes from across the pond. Peter
Dear Grammy, I know that you have wrestled this long and hard and have come to this difficult decision with some pain and doubt. I do believe that quality of life is key and if indeed this is your stark choice then I think you choose right. God bless you and I believe in miracles. 💖
I don't believe in miracles but trust sensible judgement. I have GCA but haven't lost any sight yet. I am sad to hear you have and are in danger of the other eye. I can't imagine a world without sight and if it were me I would stay with 20mg for ever if it saved mine. I don't have mine completely controlled yet but getting there I hope. Please take care and good luck
Morning Grammy, so sorry you are having such difficulties. I must say if I was in you shoes I'd up the Pred considerably. I'd rather have the side effects of Pred than live with the fear of going blind.😕
Grammy dear, I feel for you. A hard decision, but in your shoes (and I am the same age as you) I'm petty sure I would go for quality of life and deal with side effects as best as. Hugs and many good wishes.
On June 29, I was at 20 mg. I'm foggy, so not sure when but I had gone back up to 20, per rheumy, after a flare. Over the past few months I stayed at 20 until increasing problems developed with my legs, bleeding, circulation and lymphedema etc. xo 💖
Save your sight, Grammy and save your sanity! However, your decision and whatever you decide will be best for you. You have always come across as a positive person and I wish you all the best.x
M, I am weighing in here - 20mg and dropping by 5mg, too much - golden rule no more than 10% at a time........... so a 2mg drop you might, just might have got away with. But as others have said, sight is more important. So back up to 20 mg and stay there................see what happens.............this is a long game and we go carefully.
When you feel safe - and I would wait at least a month on 20mg - you could try a tapering plan with a drop of 2mg - using either DSNS or DL's. plan and see what happens as you try a very slow taper. xx
Oh bless you, It’s bad enough having these conditions without added sight problems, I too have vision loss, every time they up my pred my sight improves but docs don’t want me on higher dose.
Not sure where you go from here, let me know what you decide.
“I too have vision loss, every time they up my pred my sight improves but docs don’t want me on higher dose.”
If that’s their opinion, then it’s almost paramount to dereliction of duty..,,,,are they really saying they are willing to sacrifice your sight because they don’t want you on a higher dose of Pred?
Well I’m curious myself, I just don’t understand why they have such a problem with pred. They put you on a high dose to start with and then do their best to get you off them ASAP, regardless of how you feel. Well they do in my case. I’m sometimes tempted just to increase the dose to improve my sight but then I don’t want to cause more problems, I’m really confused and need advice.
I fully appreciate that they are worried about long term use of Pred, but if sight is at risk there is really no option.
As I’ve said (many times) because I had already lost sight my diagnosis was made by duty ophthamologist in A&E so initial treatment was from that Dept rather than rheumatology - and they obviously have a better understanding of eye issues, so they made sure dose was enough to save other eye.
Is there any way you can be referred to an ophthalmologist for second opinion.
Maybe, Just can’t do anything at moment as I’m recovering from major op on my hip, not allowed to weight bear for several weeks.
As soon as I’m able I’ll get a second opinion from eye hosp regarding pred dose, but I rather feel it’s too late as I’ve been like this for some time now. It’s terrible that this GCA attacks your vision, you feel so helpless .
I was in an emergency room, your A&E, when I was diagnosed in 2019, blind in my left eye. After visiting a vascular surgeon to set up a biopsy, I was told I had to see an ophthalmologist immediately. She prescribed the three days of IV Prednisone (which the hospital messed up and gave me the wrong dosage) and then put me on 125mg of methylprednisolone per day. There was quite a debate between the ophthalmologist, rheumatologist and primary care GP. I have found each specialty has its goal...at all costs.
My primary care always complains that I 'have to get off this prednisone,' while the ophthalmologist is 'save the eye,' and the rheumatologist tries to manage the GCA.
Well, it is going to be twenty for me...at least more than 15mg. I'm not continuing with the 15mg and 'see what happens.
I'm glad you are going to take 20mg. Ultimately, we are our own best advocates.
Hi, as someone who at 58 has recently lost sight in my left eye I would do whatever it takes to preserve the sight in my right eye so with you if you need to stay on 20mg👍
So sorry you have also been in the same position. Did you lose your sight from GCA? You're right of course, protecting your sight is paramount. Hope you are having the best support and advice you can have.
Hi Sophiestree yes I lost the sight due to GCA, it happened very suddenly I have been on the high dose steroid regime which has stabilised the condition, currently I’m on 30mg daily. Emotionally it has been a very difficult time as I was very healthy and active previous to this so it was hard to come to terms with.
I don't know if this will help you, but it did me. When GCA hit at 78, I was so active, community volunteer work, church, movies, yoga, photography, acrylic and watercolor painting, quilting, sewing, crocheting, embroidery, and driving to Canada to visit my grandchildren...just all over the place. At first, I couldn't see out of that left eye, but I was jacked up on pred and though tired....the dramatic change in my life just crept up on me while I ran to specialist after specialist looking for a cure.
Then somewhere I read...or was told....Let go of your old life and make the most of your new one. Easy?? Nope!! Trying to focus on what I could do, gradually, I was able to zero in on what I could enjoy doing, and I was less stressed.
I'm in total agreement that it was the hardest part for me....until this latest decision. My thoughts are sure with you. Develop a toolbox; things you can take out that you enjoy doing.....go to lunch~!💖
(In a way, the pandemic made it a little easier to switch gears...I can say in retrospect)
Grammy80, I agree you have to embrace a new pace of life which for me isn’t a bad thing as I have a responsible job in the NHS so there will need to be some big decisions in the coming months, but thank you for your reply it’s most helpful 😃
I hope it was helpful and didn't sound like I had all the answers. It is tough every step of the way; so be kind to yourself and don't hesitate to reach out. Hugs to you💖
I am so sorry to hear about your predicament. I cannot imagine what it must be like to have to make that decision but I know that if it were me I would do anything to preserve my eyesight. I really hope that you can resolve this and come through it in a positive way. Sending love x
Marilyn, I see this as no choice. I would do whatever it takes to save my sight. You have been on much higher doses,I am certain you can deal with 20 mg. Best of luck to you..sending hugs.
💖👩🏽🤝👩🏼👩🏿🤝👩🏼👩🏻🤝🧑🏽👩🏻🤝🧑🏼👩🏻🤝🧑🏻👩🏻🤝🧑🏼👨🏼🤝👨🏻👩🏿🤝🧑🏾👨🏽🤝👨🏽👨🏽🤝👨🏼 What a lifeline you all are...I feel every single hug. The thoughts of folks that are walking the same walk you are....priceless! You are the best💖💖
Grammy, I was too late to add my hugs...from another 82 year old. At this time of scarcity of professional help and advice face to face we have to muddle along on our own as best as we can. And thanks to this wonderful group (what would we do without your knowledge and compassion?)I have so far managed....PMR 3 years ago, refused Prednisolone until GCA hit 2.5 years ago right eye and 60mg luckily sorted it out for me.
Now on 7mg and feelings niggles of a flare (had to say goodbye to my wonderful dog and companion of 13 years)... I would not hesitate to increase Pred if I need to, despite all the side effects that come along with it. Had lymphedema with leaking serous fluid from lower legs and many other unpleasant things. My foremost wish is to keep whatever eyesight I still have. At the bottom line, this keeps us a semblance of independence.
Best best wishes and be strong.
For your coming Birthday: an Extra tight Hug!!! Sigrid xx
Sigrid, I'm so sorry about your companion. My cat died after 17 years, I did get another a year later. If you feel a flare...kick it to the curb!! I'm going to take as much prednisone as it takes. I too have lymphedema, leaking away, but do go for therapy. I have a suit I can put on at home which massages as well. It has been getting better but with additional pred it may change. I'm willing to put up with it for sure in order to retain my vision. Thanks and my best...💖
Dear Grammy, my heart goes out to you. I too have GCA (and PMR) but the GCA is, as you know, the real bugger. I like you, am also having trouble reducing but I've only had the diseases for 10 months. However I have already decided that, for myself, I would continue with Pred if there was one hint of losing my sight for as long as it took. Wishing you well x
Yes....do you still take photos? I love watercolor, and that I can still enjoy! I have a miner's hat with magnification lenses up to 5X. Right now, I am in a position to do only what I like...that is quite a gift. Thank you...💖 (I know, watercolour... a tip of my cap to my friends in the UK)
I note you are in the USA but I’ve read all the responses and will reply with this - “the ayes have it” and hope it raises a smile 😀
Yes, I'm smiling and the ayes do have it. I know IF my vision goes I'll be in some kind of assisted living or what I lovingly call 'the home'.....so it is 20mg for me!!!💖
Sending a big hug...I don’t have GCA, just poor eyesight...contact lenses & spectacles...& I would do just about anything to save my sight, I think! S x
Dear Grammy, 'scuse my considerable ignorance, but is there no possibility of your having one of the so-called Steroid-savers/DMARDs if the steroids are not doing it for you?P.S. I would also want to preserve the sight!
No ignorance in sight...good point. I'd been on Actemra for about 1.5 years but in June of this year, I developed cellulitis in my right leg. It was bad and I was in the hospital for a week and had infusions of antibiotics after. I have hardware in my lower right leg as well and it could have been far more serious if the bacteria settled on the metal. I'm a very slow healer and my rheumatologist is concerned about infection.I think my body and myself are reaching or have reached...choice time. It is kind of a no-win but lesser loss. At almost 81, with all the things my body has made it through....I feel very fortunate. I'm going to choose my sight and hope it is for a while. Two things carry me forward and they are my faith and this wonderful forum. Who knows, I may be writing on this forum at the age of 100~!!! You are all so amazing. 💖
Oh, I remember when that happened and my heart went out to her...and I was so glad you came to the forum. I hear you and really appreciate what you have said. Give my best to your Mom and my best to you.💖💖
Thank you so much. She’s up and down. Hopefully Will feel better now more people can visit Need to get her a walking companion since her friend not always available x
I hope you can find someone. I would think that 'being in the dark' any social contact would be so important. Can she listen to books?... I do, but I have to fight sleep. I can't imagine what a shock that was...no time to adjust to anything. Does she have a smartphone that she could tell to dial a certain number? I know many of my friends who are alone and dealing with one thing or another talk on their phone a lot...I do too. My social world is the folks I left in Maine and the forum and a painting group. There are periods where I just don't do anything....but I sure feel better when I'm 'engaged'. Your Mom is fortunate to have you. Is there any organization that works with the blind that could help? In Maine, a gal came every week, brought implements and lights, and showed me ways to manage low vision. They don't have anything like that in Indiana....I hope they do where you are. See...I babble on and on...💖
Have you seen a neuro opthamologist to find out out of the vision loss is due to GCA for sure. I just had a vision field test don with more loss of vision. As I tapered down on prednisone my vision became blurry, new lenses did not correct it. Eye pressures increase too. I went back to neuro opthamologist who discovered posterior subscapular cataracts. The other opthamologist missed them. They are not like the cataracts that come on slow and can be seen on the front of your lense. They are fast growing and really obscure your vision. Not saying this is what you have, what I am saying if your opthamologist is not a neuro opthamologist I would suggest seeing one. They are very knowledgeable when it comes to GCA and the eyes. Mine even did my temporal biopsy 8 months ago. I wish you the best.
Thank you, pmac. I have seen one. My rheumatologist recommended it about 9 months ago. I've gone to him twice, but my status was holding at both visits, and nothing special was going on. I'll talk to my rheumatologist about it on Tuesday. It can't hurt, for sure. Best to you💖
Grammy. Blindness is horrifically disabling and isolating. It’s not just the physical limitations, but also the emotional fallout. So to me, blindness is not an option. First, taper more slowly. Second, I assume that you are on tocilizumab. Third, consider adding methotrexate if you fail the next SLOW taper. Fourth, you should try to get fluorescein angiograms to monitor that blood flow to your good eye. The angiograms would be cheaper than the cost of caring for a blind person. Good luck.
As a PMR person only, I can only say my personal priority at the young age of 72 is Quality of Life. PMR aside I would protect my vision from any loss at all costs. Last but not least, I would never break the reduction rule of no more than 10%. I'm so sensitive to reductions that my reductions have been .5 mg for years.
Wishing you all the best whatever your decision Grammy80
Dear Grammy80.I was diagnosed with GCA in 2015 but lucky not to have any effect on my sight. My consultant has a tight schedule on pred reduction, took 3 yrs. I later developed other artery involvement so had another 2yrs on pred along with methotrexate.
I am now in remission but in a considerable amount of pain because of joint and muscle deterioration.
With that background I saw my consultant in August. I was given the choice of more pred so I felt better or upping my pain meds until I have an op. I chose the pain relief. I have always done as he says re meds. He described the option of more pred as 'borrowing from my future self'.
I have described above to explain how against upping pred I usually am.
However if it was my sight that was affected I would take it without a second thought.
How difficult for you. Wishing you all the best whichever path you take.
Hello Grammy, I'm so sorry to hear about the deterioration in the sight of your good eye. Only you can make the decision about the pred but I feel I would be with you all the way. I have had GCA for 6 years now, with PMR coming to the fore too. My optimal dose is a lot less than yours, it's 5mg, but I will be staying on that dose as I can't seem to reduce further. I do think quality of life is everything and I wish you all the very best. Linda xxx
Thanks, Linda, since last September my internist has been pushing for reduction; I feel that is because the body is his primary concern. He has always said he would like me to get to five...but I never made it out of double digits. I truly wish you well and it sounds like you are on a good path.Until I got GCA I was 40 yo (mentally). Since I haven't driven in two years and my staying power has dwindled considerably; I'm choosing sight. Stay strong and my best to you.💖
😊 I totally understand about the mental age!!! I still think I'm about 40 but my body tells me differently 😄 We have to adjust to this silent disease....even now I sometimes want to scream at people!!! I still look relatively slim and fit for my age (69) but I am actually quite limited with my physical activity.....and would happily sleep for 10 hours a night...if I could!! I would choose sight too, so you stay strong as well and take care xxx
"we have to adjust to" sums it up altywhite. I keep getting told I look fine. I've had a good 4 weeks continuous physical improvement and ability to work relatively hard but I'm dreading the possible backlash. Seems ok for now but I'm not yet reducing so probably pushing the limit of the full dose. GCA is such a difficult and intransigent foe. I'm backing off for a good few days now to catch up on rest. Sight has to be paramount.
I think that the best decision is to have the best quality of life you can , so if it means the dose you feel the best at is the one for you , then go for it.You sound a very brave lady !best wishes Viv 🌹🌺🌼
What a wonderful forum this is. A real tonic just reading all the positivity. I'm hoping to report progress after splitting my dose but will wait a few more days to see if it works consistently. That's a word I'm coming to almost pray for because the one thing none of us can expect is this. No plans to reduce yet until inflammation controlled .I've not lost my sight fortunately but given what I went through before diagnosis and pred. I am beginning to think I was so lucky. Some of the stories I have read back on have really touched and scared me. I'm taking extra care to be wary so I wish you all the best in your difficult choice. I think that your decision is what everyone here backs. No brainer.
I'm so thankful for this forum also. There are no badges for quick tapering for sure...and nobody should feel like a failure for their bodies not being cooperative. In the end, I think all with GCA would choose sight!!💖Bring on the prednisone, for me!
Grammy I have read all your replies and so pleased you seem closer to making the decision to save your sight. This forum is a godsend and although I don't often post I do try to read as many of the posts as I can. I have given up doing jigsaws, but can still crochet(slowly) I am on D L's 7 week taper and going well but my kidneys are failing. The good news is that I have a date now for a spinal epidural in October and if I am able then to walk unaided I'll put out the flags.
Looking forward to reading all your new news......merril
Hello Merril, Yes! I have decided to choose sight. After spending so much time thinking about it, I also realized that my control is limited. Still, I will feel I've done all I can. It is easy to see by reading your response that you focus on the positives in your life...I think that is key to maximizing the quality of our lives.
I'll look forward to a picture of those flags that you WILL get out!! Marilyn💖
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