← Return to GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Discussion
Comment receiving replies
@grammy82

@nativeoregirl I just wrote you the longest response...and poof it disappeared, so glad I found you again.
This is going to be condensed...I felt terrible about your biopsy, that it was such a bad experience. You mentioned 'eye doctor'. Are you in the States? When I went to ER when I lost sight in left eye...they scheduled my biopsy for five days later...told me to see an ophthalmologist (I don't think they had a clue) and set an appointment for 12 hours later. Really critical wasted time.
The only person who dictates my treatment or prescribes the pred and Actemra is my rheumatologist.
Your absent rheumy and dangerous office staff....need to be seeing you more regularly---at least that is my treatment. Actemra levels out the inflammatory marker in your blood test, CRP and ESR. If you are on just pred, my rheumy did that blood work monthly. I'm concerned you are being watched appropriately. Is getting a more available rheumy, monitoring you an option?
I keep watching YouTube videos on watercolor..I feel I use it like acrylics and have to loosen up and let the water do its thing...difficult for me, but I love it. Time is an issue!! My best💞

Jump to this post


Replies to "@nativeoregirl I just wrote you the longest response...and poof it disappeared, so glad I found you..."

Thanks Grammy for your fast reply! My blood inflammation markers are
normal and initially elevated but still very very low. I have all the
other symptoms, neck, right shoulder very painful (also could be a tear as
well in shoulder), headaches now since lowering my pred from 20-15. DR us
checking blood every two months. I’m hoping once she’s back she’ll be more
attentive. I did have a very long zoom call with her last appointment. I
know you can have PMR with normal inflammatory levels and I don’t know
where I’d be without the prednisone. I couldn’t move my arm and I hurt so
much it was debilitating. So once I started treatment I am much better
until this last taper. I know it’s a process. I’m 70 live here I. The
states in the Pacific Northwest “Oregon”. have a great job as an
advertising consultant in the world if Nursing Recruitment- my focus is on
Nursing Schools to promote their Online Nursing Education I work less than
part time and live it. I live alone with my Mini Golden Doodle however I
have a Don and his family nearby with 2 grandkids.
I know thisPMR is the result if my last Covid booster- and it will be my
last for sure! Ha ha. Thanks so much for sharing your experience and
thoughts! It means a lot. I love wAtercolirs! I started with acrylics
years ago when I had time to make for it. There is so much out there
online to learn from and free! I have tons of watercolor books and that
had worked very well for me better thAn any class although I like the
camaraderie of a shared experience ! I know this was long but wanted to
give you my bio! I guess I need to put it out on this site too! Be well
keep painting! Deb