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

Discussion
Comment receiving replies
@nativeoregirl

Thank you, Grammy! Yes, it is frustrating, I had to wait 9 months to see this Rheumatologist, and most of the time she is just leaving on vacation or coming back from one. I had to wait 3 weeks for the results of this biopsy and they called today to tell me Dr is back in India and will get to me in mid-July. I have only seen her twice both times going on vacation, and she's gone for weeks at a time. No answers in between She is very good but scattered with where I am at in my treatment. The assistant/Office Manager tries to play Dr. and cannot keep two thoughts straight. I am afraid it is the times we are living in post covid. Drs are disappointing me. Don't want to change because I know it will be more of the same. By the way, I still didn't get answers to why I should taper down without knowing the results. Thank god, they came back negative. The biopsy was terrifying they didn't give me enough medication, and it was done in a very small outpatient facility/building smaller than a dentist's office. The staff was great but I would never go there again for such a procedure. I felt they were running a racket especially when the next day when I went for the follow-up appointment at a larger facility, the same eye Dr. that was treating had a busload of patients. It was a turn-off to me that I was shuffled in quickly less than 24 hours after the biopsy. Anyway, I probably shared too much and strive to be positive but also I am a realist. Also, he and my Rheumatologist were not agreeing with my treatment. Go figure. Watercolors are so much fun and a great distraction. I just need to find more time.

Jump to this post


Replies to "Thank you, Grammy! Yes, it is frustrating, I had to wait 9 months to see this..."

@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💞