Well, I just took 60 mg of prednisone~Wednesday night in the States~

[Grammy80]

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.....💞

[VeeWat]

so glad you went in when you did. I hope things get better for you and you have a productive visit with the Rheumatologist on Friday.

[Grammy80 in reply to VeeWat]

Thanks, VeeWat💞

[123-go]

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 😍).

[Grammy80 in reply to 123-go]

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.💞💞💞💞

[powerwalk]

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. 💐

[Grammy80 in reply to powerwalk]

I took the advice of all of you....no headache or pain today. Yes, I was scared...now I'm feeling 'pred' brave.🤣😃💞

[Bridge31]

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. 🌸🦋🌸🦋

[Grammy80 in reply to Bridge31]

Thank you, all of you, for continuing support. The best thing that happened to me after 8/2019 was finding this forum!!💞

[DorsetLady PMRGCAuk volunteer]

So sorry to hear this, but as others have said, and you know yourself, you did the right thing…

Best wishes for Rheumy appointment on Friday…🌸

[Grammy80 in reply to DorsetLady]

I'll take those good wishes...my thanks.💞

[Sophiestree]

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.

[Grammy80 in reply to Sophiestree]

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💞

[Sophiestree in reply to Grammy80]

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.

[Tiggy70]

So sorry to hear about this setback. Sending you a virtual hug 🌸

[Grammy80 in reply to Tiggy70]

I'll certainly take it, thanks.💞

[Rugger]

So sorry that you're having this flare, but impressed that you are such an 'expert patient', knowing just what to do and acting on it.

Pred is our friend in need and you certainly need to protect your right eye.

I know you'll keep us up to date with how you are. 🌻

[Grammy80 in reply to Rugger]

All of you have educated me from the very start...explaining the disease, the meds, just everything. Pred is indeed our friend....💞

[Koalajane]

well done for going to ER. I hope you have a good meeting with the rheumatologist and so glad you did what you did.

Keep strong

[Grammy80 in reply to Koalajane]

💞Thanks...

[montebello]

So sorry to hear this but so glad you took action. Your attitude is stunningly uplifting. Thank you for being you.

[PMRpro Ambassador]

It is only a number - and if 1mg keeps it at bay next time - stick!!!

[Grammy80]

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!!!💞