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Adjusting to life with temporal arteritis

Polymyalgia Rheumatica (PMR) | Last Active: 11 hours ago | Replies (259)

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@saraanne

I want to share my GCA experience in case others might want to try non controversial things while on the meds.

I was diagnosed with GCA in October 2023. On prednisone for 13 months. While on it I was walking 1 mile every day, meditating every day. No alcohol, no added sugar, no gluten, limited simple carbs like pasta. I ate 9 cups of fruit and veg per day (Dr. Wahls). For pre-existing osteoporosis I added a vitamin K supplement, and continued vit D. My post prednisone bone scan showed a slight gain in bone density, not a loss.
3 months off prednisone without symptoms. (no Headache, jaw ache, scalp pain ).
I’m trying immune system support (pre and probiotics (Seed), concentrated mushroom powder, kefir) for diverticulitis (DV) probably from prednisone immune suppression.
These life style changes were a lot! But I needed something I could do. My docs approved. I’m in remission now. I’ll just have to wait and see about long term results. I’m hopeful.
Wishing you all many beautiful spring days to come.

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Replies to "I want to share my GCA experience in case others might want to try non controversial..."

About a year and a half behind you, so you are a pioneer for me! Hope you are doing well....
Almost made it to 88 with nary a dx or tx. Happy Birthday in February of this year included GCA dx and beginning Prednisone. tx. Weird experiences both. Next Monday April 28 I begin monthly Actemra infusion for a year as well as going on the fast track Prednisone taper. Will see what happens. Like you, I am active (e.g.,a staff writer for our 142 year-old hyper local independent weekly newspaper Wet Mountain Tribune, many physical projects at the ranch, walk everywhere I can, etc.), mediate twice daily, For 35 years or so, have used mineral and vitamin supplements as do you; mine include: B12, C (I know it's been discredited, but I still follow mega dosing promoted by Linus Pauling; one thing for sure--creates expensive urine!), CoQ12, Ginko Biloba, Lutein, a probiotic, and a men-over=50 one a day....Like you, waaaaaay cut back on sugar, lotsa fruits and veggies for decades, but unlike you, use gluten free here and there but also ordinary breads (some of which I bake) and pastas, and have maintained decades habit of a Pinot Noir wine in the evening....
Don't know what lies ahead....of course pain free while on Prednisone protocol, not sure what to expect as Actemra kicks in, prednisone kicks out....