GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Hi everyone, Two months after recovering from a bad bout of Covid (tested positive in late February, 2020), I never felt 100% better. Two months later I woke up one morning with the taste of salt in my mouth, and my symptoms have snow balled ever since and not in a good way. Fast forward, 3 years and 2 months later and 15 Specialists and 3 Hospital visits over this time period, I was finally diagnosed (this past Tuesday, 8/29/23), with PMR, by an excellent Rheumatologist in NJ. This coming Tuesday, September 5th, I am having a Bilateral Temporal Biopsy done, due to my experiencing double vision over the past week and a half.
My questions are: I'm currently on 60 mg of steroids for PMR, I'm sure as a precaution that I could have Giant Cell Arteritis.
1. Besides the steroids, what have you found to be helpful in managing these inflammatory /autoimmune diseases (I am also on Gabapentin, 900 mg/day for pain)?
2. Has anyone tried a holistic approach, in addition to the Prednisone, that truly helps support your overall health?
3. What has been your experience with having Giant Cell Arteritis in balancing the short term and long term side-effects of the medications? What has been helpful or what has not been working for you?

PS - I'm overall a very positive person, so I've added pictures of my pups to put a smile on your face for you animal lovers.

Hello @joan7, Welcome to Connect. Love the photos of your beautiful pups. They definitely put a smile on my face. You will notice that we moved your post to an existing discussion on the same topic so that you can meet @tsc, @emo, @marilyncarkner and others. If you click the link below it will take you to the beginning of the discussion where you can read what others have shared.
--- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/temporal-arteritis-1/.

I think it's good that you are having a biopsy to test for GCA. Can you provide an update after you know the results of the biopsy?

Hello @joan7, Welcome to Connect. Love the photos of your beautiful pups. They definitely put a smile on my face. You will notice that we moved your post to an existing discussion on the same topic so that you can meet @tsc, @emo, @marilyncarkner and others. If you click the link below it will take you to the beginning of the discussion where you can read what others have shared.
--- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/temporal-arteritis-1/.

I think it's good that you are having a biopsy to test for GCA. Can you provide an update after you know the results of the biopsy?

Hi @joan7, I had a temporal artery biopsy done on my right side - since that's where my symptoms were. I had symptoms of PMR, and later GCA, for a year before disagnosis, following an ankle injury. The biopsy was positive - I was put on 40 mg of prednisone, tapering down 5mg every two weeks.
The rheumatologist also sent me for a Dexa scan, I guess because prednisone weakens the bones. I hadn't had one for ten years and I was diagnosed with osteoporosis as well. That concerned me more than the GCA, and I went on Alendronate.
I found it difficult to sleep on the higher doses of prednisone. It gave me lots of energy and a motor mouth. It took care of most of my symptoms. I just continued to exercise, with care and targeted for Osteoporosis, and eat well, no processed foods. I used an infrared lamp and infrared heating pad for comfort when I needed it.
Prednisone took care of the GCA and I' ve been off it for 10 months.
If you like Yoga, Dr. Lauren Fishman has a program that builds bone density, 12 Poses vs Osteoporosis and Dr. Alyssa Kuhn, has exercise programs for osteoporosis and arthritis. All the videos are available on YouTube.
My mother-in-law got GCA in her late 80s and lived to be nearly 100.
On thing my rheumatologist prescribed - a low dose aspirin everyday as people with GCA can later get aortic aneurysms.
I wish you the best.

Thank you so much for sharing your journey regarding your PMR/GCA. I'm not only going to keep the doctors in mind, but also make myself a running list of things that I can do to improve my health that you have listed above. What I found fascinating right off the bat, which you may think is odd, is that you had a ankle injury prior to your diagnosis. I'm currently hobbling around with a torn meniscus root and fracture in my left knee, which was happened prior to my diagnosis. Unfortunately, the biopsy has taken priority over my having knee surgery this Friday, so I had to cancel and was told to reschedule when I am more stable with everything else going on with my PMR and possibly GCA. I have been taking Calcium and Vitamin D every day since I was diagnosed in my 50's with Osteopenia. I also have been taking Boniva once a month, to top it off.
I take low dose aspirin probably for the past 8 years, so I think for now I have everything covered. Definitely will look into the Yoga once my knee is repaired (right now I have trouble tying my shoes, because I can't bend my knee too well or cross my legs). I've been able to walk finally without crutches just with a knee brace on, but it's been a challenge to get to that point. Still get pain if I move wrong or do too much (learning to slow down, although the Prednisone is speeding me up). Thank you for your kind words of encouragement. Once I get my test results back for GCA, and will provide an update. Thanks again!

Hi @joan7, it sounds like you have all of your bases covered. My aunt also had PMR and GCA after she injured her back. I've read that some injuries/illnesses trigger a response that can cause the immune system to go into overdrive. There are also genetic markers for PMR/GCA and it is most prevalent in Northern European countries, especially Scandanavia. My background is largely southern European, but who knows what my ancestors were up to thousands of years ago?
Good luck with your biopsy. It was a relief for me to get a diagnosis. And I hope a successful knee repair will follow.

Thanks for letting us know. I, too, was wondering and about to inquire. Wishing her a speedy recovery. Hope no gca set-backs.

Hi Joan, yes I had Temporal Arteritis after a nasty fall after donating blood at OneBlood Mobile Bus. After stepping out of the Bus, I passed out falling face first. I had very bad head, neck shoulder pain. After my astute ENT specialist called out GCA after seeing raised nodules on both temples. Sent me to vascular surgeon and I had 1-1/2" of arteries removed on both sides, in Emergency Surgery. I must tell you it was major surgery and I had a painful and long recovery in the post operating recovery room. Good Luck.