I was down to 9 mg. GCA. Started at 60 October 2018. Today right eye sight started disappearing from the bottom 1/3. Off to emerg. Saw Opthomologist who put me on 1000 mg for next 3 days then back on 50mg after. Very sad. See him again tomorrow for more tests and another 1000 mg
Drat I have been swimming, kayaking, eating right.
Drat.
Oh no alvertta! You have taken such great care and seemed to be doing well. How is your sight now?
Sending you love and hugs! 🌸💖
Right eye is still 1/3 gone on bottom. Fingers crossed.
Everything crossed for you!!! I want to know everything, This was not supposed to happen.
😟 “Drat” is very restrained! Oh gosh, it’s what we all hope will never happen. Sometimes there’s no rhyme or reason. All the best 🌻
Trust me I did not say drat when dr told me. The f word several times. Then a big cry. Feeling very sad. Kayak Cancelled tomorrow.
That’s more like it! It’s so hard when you have to stop doing things that keep one sane. You’ll be back out of that cave, as you know.
Thinking of you. Safe hugs. Look after yourself girlie x
I agree with Sheffield Jane, nothing matters more than your eyesight, I know it’s sad but you have absolutely done the right thing
🥂🥂x
I know ....I need one eye. Never thought this would happen. I have had such a smooth ride for the last year. Drat.
All my illusion of control has gone now. I believe that with care we could avert this. Apparently not.I am sad for you too. I bet it is not the end of Kayaking though. Be strong!
Yup. One eyed kayaker. My new name. Lol. 🏴☠️
I thought care counted. I have lost 13 pounds in the last 2 months by being “good”. WTF. While the world grew pandemic fat I was going the other way.
Goes with mine, courtesy of my son - “One eyed Schumacher” - shows his age, if not mine!
Hope it goes okay, but if it doesn’t you’ll be surprised whst you can achieve with just one....including kayaking!
I would be asking a lot of searching questions. Your calm now is amazing although you did cry when told.
Yup. I sobbed
I once broke my leg in 4 places on day 3 of a 35 day vacation I asked WHY? many times. Eventually I figured it out. After surgery, We went on To have a great vacation.
I need one eye Hope I keep both
The original eye problem was the left. I am surprised it is the right. And different. The left was total Sparkles and could not see a thing for a minute or two. This is definitely a brown cloud
I so hope that this resolves for you!
That is a significant weight loss that ought to have had alarm bells ringing!
I was happy. I am obese. Lol.
Glad you caught it in time but so sorry you are going through this. You are such a determined fighter, you don’t let much keep you down. I see you out kayaking in no time! Take care
Thanks. I hope we got it. No improvement so far. Fingers eyes toes and knees crossed. Xxoo. Ps. Hot enough for you. We are hiding inside.
Oh, I sure hope you got it in time.
Way too hot, I’m melting😰👵🏻😰
We are too. No swim til the iv port comes out Wednesday.
At least with PMR you know when you’ve tapered your dose too far - pains return. With GCA the warning doesn’t seem to be there, just a big wallop!!
Really thinking of you and crossing everything that will cross!! Big love from Downunder xx
So sorry to hear this, alvertta - it's tempting to think all the care you've taken was for nothing but you made the most of life and lost weight by being 'good', more power to you and hasn't been wasted time. But a good swear and a cry are definitely cathartic...
Lots of people worried about eyes at the moment, me included, GCA is the silent lurker we all fear - wishing you lots of luck and keep us posted. Keep the kayak at the ready 
That sounds absolutely terrifying and so bizarre when you have been doing so well. This really is a roller coaster ride. Hoping with all my heart that this is sorted for you and you get back on track. 🤞🤞🤞🤞🤞
So, so sorry you are going through such a scary time. Let's hope you've caught it in time. Sending you virtual hugs.
So sorry - and there is nothing to make it feel any less scary. All the best.
Alvertta, this is not the news anyone was expecting! Let the support and good wishes from people all over the world bring you comfort!! We are all sending you virtual hugs!!
My thoughts are with you, like you even after 5+ years I live with the fear of a GCA flare especially as now when I'm going through a PMR flare that won't settle down. It is scary but each day with no decline is a good day and I know from experience that the massive Pred doses can call a halt. Keep swearing and smiling xxx
So sorry to hear your sad news. Sending love and big hug. Fingers crossed for a positive outcome.
Sometimes no matter how hard you try the rollercoaster of life keeps coming at you. Be sad, be angry and then put all your physical and emotional energy into living as you have been doing. I am on such a high roller coaster, but we keep pushing forward hoping for a gentler ride.
Sending good wishes.
So very sorry you are going through this. Hoping this difficult set back will turn around for you. Swear or prayer - do whatever works.
It is very sad to read your news Alveretta as I have been told once you take Pred then you cannot lose your eyesight........hope you regain full vision
So sorry to hear this Alvertta. I had 3 separate 1000 mgs steroid infusions over 3 days at hospital when I had a flare a few months ago. I think I was on 40 mgs at the time. It is really scary and frustrating when flares occur. Totally understandable that you feel this way as you have been doing amazingly well. How is your vision now?
Thank goodness that the hospital acted quickly to prevent further damage. Hope things are improving for you. Look after yourself. X
Horrible news, thinking of you...keep us posted how you.....
That is some setback. So sorry to hear it. I hope with all my heart that it soon resolves in the best way possible. In the meantime, I do so admire your bravery and send you my thanks for a timely reminder that this is a treacherous condition. Kate Gilbert calls it the last blow from the ‘dragon’s tail’ which strikes when it seems the dragon is slain. I hope that’s all it is and that your sight resolves after the fast treatment you were given at A and E. Please let us know how it goes from now on. Love and very best wishes, Carrie
So scary for you and a wake up call for us all Do hope treatment works - they’re doing all they can as you are too - on the ball you were.
Best wishes
So sorry this has happened Alvertta. Wishing you all the very best. Xxx❤️
How terribly scary for you! Sending you positive thoughts and hugs for the best possible outcomes.
So sorry. A wake up call for all of us especially me. I am down to 12.5 and like you started at 60 February 2019 . I had a few flares but am doing well now. Figured things were clear sailing now but will remain vigilant. Hope all goes well and you caught things in time.
So sorry. You're being very brave - I've got everything crossed for you.
So sorry alvertta, life just isn't fair. I spoke to GP yesterday for first time since January. Thought I was doing OK but she said not to be surprised if I have a flare and to contact her straightaway. Wakeup call for me. Best of luck with your eye treatment. Thank goodness there's the wonderful support of others on this site.
I'm so sorry to hear this and hope you don't suffer any further deterioration. I was upset last month about having a flare of GCA symptoms, but in my case it was the occipital headache and jaw pain, no eye symptoms. I now realise how lucky I was.
Sounds like you are in the US? Once things settle, may want to look into Actemra. I was stuck on 20 Pred and could get lower. Decided to try Actemra. Took about 2 months of weekly injections to kick in. Then over the next year tapered Pred to zero. Have been on just Actemra for 1 1/2 years. No real side effects. Down to every other week. Feel great, up to running a mile a day. Not for everyone, have to do your homework.
I did ask. Once I am back at 20 we will look at this A.
It is rather expensive. Some don’t get off Pred completely with it. Good luck with current situation. I don’t envy you back on high dose Pred, but at least you know what the journey will bring.
Oh Alvertta I am beyond disheartened to hear of this latest setback. I’m aware you were taking great care, being physically active, and watching your diet. It is a testament to your dedication to your health and well being.
For f**k sakes!! I can only imagine how disheartening and scary all of this is. Hoping that you will get back some sight in that right eye. Good thing we are blessed with two of them! Your response makes sense and I’d be swearing and sobbing as well...we are human with feelings. Reading your update caused my heart to sink and even shed a few tears my friend. Do what you need to in order to get through the next while.
I’m curious to know if you get routine bloodwork, and if so, did it show any elevated levels? Just wondering if this might be helpful to monitor moving forward? Anything (besides the higher doses of pred), that can help?
My thoughts are with you during this difficult time. I’ll text you directly with the understanding that the next few days may be filled with appointments and such for you. Please do take care and keep us updated.
June 12 had massive blood work. Doctors were very happy w all my results. Go figure. F f f.
So sorry alvertta. Must have been an awful shock. Do hope your eye recovers its sight.
Mary
I was given the wrong dosage of Prednisone....?
Pred cut back
