After five years, on June 27, I got to zero pred, though I am continuing Actemra. It was July 26 when I started having a headache, which over the next few days had progressed to sharp pain down the left forehead and was needle-like in my left eye, my blind eye. I had intermittent pain on the right side but far more on the left. There was also some pain in the left temple region, again downward. I was so tired and slept on and off, and on Monday, when I went to call the Dr., it was after office hours. I was nervous about going to bed since I'd lost sight in my left eye while sleeping. I thought if I were reading this on the forum, I would be yelling...Go to the ER/AE. I did.
They did a brain scan to rule out any brain issues; I'd had a stroke in my 40s. The ER Dr. contacted my rheumatologist, who ordered an IV with 60mg of methylprednisolone, the equivalent of 75mg of prednisone. It didn't seem that long before the pains started to subside. He wanted them to keep me overnight so he could visit in the morning. Since I took Actemra, my ESR, CRP .03, but clinically speaking; I was flaring away! My rheumatologist gave me a script for 20mg tablets and told me to take 60mg if the pain came back; that was Tuesday morning. It was my emergency kit.
I had a few pains last night, Tuesday in the States, but by noon today, the frequency was increasing: noon, 1:15, several in the afternoon, and two really sharp ones around 7-7:30 PM. So, I cracked open the kit.
I'll take prednisone any day to keep my eyesight. I'll see the rheumatologist on Friday morning. As much as I looked forward to getting to zero, I feel safer now. I look forward to getting to a low-maintenance dose. It's OK.....💞
Written by
Grammy80
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I’m so sorry to hear that you’ve had this setback, Grammy. Praise for your actions and for the ER doctor and rheumatologist who may well have dithered but instead recognised what needed to be done. We’ll be thinking of you.
(Maybe you should change your forum name to SavvyGrammy80 😍).
Oh, you are funny!! As I said...if I were reading this on the forum, I would be yelling...Go to the ER/AE. I did.
So...it is all of you who saved me!! You are savvy bunch....when I was in the ER, the nurse told me that in eight years of working there, I was the first GCA patient she ever had, Viva! UK and HealthUnlocked.💞💞💞💞
Oh lots of good wishes. Good you took your own advice to go to ER. Hope rheumy visit goes well for you. Yes maybe a maintenance dose instead of totally off pred. That must have been very scary for you. 💐
So sorry Grammy that you are having to go through all this again. Well done for acting quickly. As Powerwalk said it must have been very frightening. 🌸🦋🌸🦋
Wow. That's a scary story to read. As you say, in times like that you have to ask yourself what you would say to a friend and do it.
It sounds like you need the really high doses right now. You have a great rheumatologist there for being on the ball and taking it all really seriously.
I shall await the update on Friday with great interest. In the meantime a very big virtual hug. What a body blow for you after thinking you were pred free.
What was scary, Sophie, was the fear that I would wait too long, not act soon enough, or act prematurely~!! Like life, it is the uncertain moments that cause us the most anxiety.
Honestly, I'm happier that I'm back on pred and have quelled the flare than any concern about being on prednisone again....my eye is too important to me, like all of us. My taper went so well; after 5 years, I'm confident I'll get to a lower dosage than 60mg. But! This time, I'm holding on to a low-maintenance dose. I'll be 84 next month; how much trouble can I get into? (Not as much as I'd like to😏😏) All I want to do is paint, even though I seem a perennial novice. Maybe it is my style? Thank you💞
How lovely to hear you paint, that must be a great zone to be in. I totally agree re the pred, quality of life and peace of mind have to come first. I will be interested to hear how today goes.
My thoughts, too!!! It worked in the hospital, and it worked again last night. I saw the opthalmologist today, and there is no additional permanent damage, yeah! He is so great and humble...a rarity; he's the one who referred me to neuro-ophthalmology. I see the rheumy tomorrow. I'll take the 'cannonball' and taper to that one mg. Thanks!!!💞
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