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@artist01 Laurie, I think we should probably be having this conversation in the PMR group. You have certainly been through the wringer with this terrible disease. How are you feeling now? How are you managing everyday activities? How are your bones? My doctor has me taking a low dose of aspirin daily due to the risk of developing an aortic aneurysm down the road with GCA. 30% of those with PMR develop GCA - so I guess there are fewer of us to post. A doctor from the Mayo Clinic, Bayard Horton did some groundbreaking work on temporal arteritis in the 1930s. Years later, in the 50s, steroids were found to offer relief. I read that Dr. Horton's wife developed temporal arteritis. I guess before that, people just languished with the disease. So, we are fortunate to have it now, with about 70 years of clinical practice and experience preceding our treatments. Best to you, Teri
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@tsc. Thankyou for your message, Teri. I have a battery of new meds, following the July heart attack, including one baby aspirin daily, blood thinner, blood pressure meds, a pill to calm my heart down, Actemra injections every two weeks for my GCA, and other life saving meds.! You're likely in the same boat.
I do wish there were other GCA patients on Connect. It sometimes feels like I'm the only one in the world
(besides you?) that has this miserable disease. Thankfully, I have an excellent rheumatologist, although she's a two hour drive via Wheels for Wellness. She and her excellent nurses are always available to me by phone, and she watches my weekly lab work carefully in case adjustments are needed regarding the Actemra injections.
You asked how I manage daily activities. Well, they're pretty well nonexistent. I've graduated to going to the dining room unescorted, with my walker, once a day (need a wheelchair after each hospitalization), and I'm now having my daily shower on my own !! No more standby shower with Care Aid.
I think I've mentioned previously that I'm on a wait list for Long Term Care. (I live at an Assisted Living seniors facility right now.)
That's about it for now, Teri. I'm still working hard toward gaining strength and independence. My best to you. Laurie