Finally, at zero prednisone...still Actemra~!

[Grammy80]

I've certainly been off the grid with my trip to Maine and then an eight-day visit from my 19-year-old granddaughter from Canada. My brain and heart are just full of wonderful memories.

I am still doing weekly injections of Actemra and am certain my rheumatologist will continue that. I remained on .5 mg of prednisone until I returned from Maine and unpacked. I stopped pred on June 27; so far, so good. I started this GCA journey in August of 2019 at the ripe age of 78, this September, I will turn 84....so much for Grammy 80!! I owe you all so many thanks because, without your support and knowledge, I know my mental state wouldn't have been able to be so strong. And I realize my journey is not over.

About midway through my month of taking half a one-milligram tablet, I began to notice soreness I didn't have before, and it has become more noticeable. Yes, when I wake and sit, my joints and even fingers on one hand are sore. That darn shoulder replacement last summer didn't help either. I'm feeling things there that I hadn't noticed. I feel fortunate to be as old as I am; quality of life is most important; moving around! I'll be seeing my rheumy the second week in August. Is it possible that just one milligram can make that difference? I guess it is because I had a friend in New Hampshire, GCA, who told me she tried for 22 years and couldn't shed that one mg!!

(One little story) That NH friend, who passed at age 90, was the wife of an orthodontist I worked for. Back in the 1980s...he told me about a rare disease his wife had..head..arteries...blood flow..possible sight loss. When GCA raised its head, and I was in the ER, all of his words came flooding back. I called him on my cell and talked to both of them, and, yes....it was GCA she had...and we bonded~ again. Life is amazing....so many teachers come our way....like all of you.💞💞💞

[DorsetLady PMRGCAuk volunteer]

Is it possible that just one milligram can make that difference?

Most certainly is… as many will testify..😊.

Great to see you back safe and sound…and if like your friend you cannot shift that final 1mg, so what! Just think how far you have come.

[Grammy80 in reply to DorsetLady]

Hear! Hear! I agree....whatever it takes. I'll be vigilant.💞💞

[PMRpro Ambassador]

Even HALF a mg can make a difference!!!

[Grammy80 in reply to PMRpro]

I'm a believer.....I was never diagnosed with PMR and never had any symptoms before the onset of GCA. Who knows? When you are in your mid-eighties, pointing the finger at a Dx isn't easy, but I will chat with the Doctor. Enjoy your people watching...💞

[Telian in reply to PMRpro]

I’m testament to that Pro. 🌺

[Grammy80 in reply to Telian]

I'm more and more optomistic...💞

[Telian in reply to Grammy80]

You have the inner strength to succeed too 🌺 You are an inspiration to us. 🌺

[SheffieldJane]

Love and best wishes Grammy. I always find you inspiring. Xx💖

[Grammy80 in reply to SheffieldJane]

Same to you....fingers crossed 💞

[Hidden in reply to SheffieldJane]

So do I, as a newbie. If I ever get to 1 mg I will be content. At 13.5mg I have a way to go, but not yet, early days.

[Nap1]

yes l mg can make a huge difference. 1/2 can also make a huge difference. I’m on 5 as of today. Hope it works. Been back and forth for 10 years with GCA. Use my shots weekly as well. Sometimes bi monthly. Presently on 5. Will see how that works out, I’m 82. Had PMR first. Good luck. Here if you want to talk a bit.

Marilyn from Florida USA.

[Grammy80 in reply to Nap1]

Marilyn from Indiana ...back at you. I'm pleased I'm where I am, but feel I may be a yo-yo to down the line and that is OK. At nearly 84 I want quality and after all these years....what more damage can a little pred do....as the Beatles said, "With a little help from my friends."💞