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

I also feel unsteady when I am having a bout of pmr. I would say I feel a little dizzy instead of shaky. And very fatigued. I just want to lay in bed and watch TV and every chore is an effort. I used to be quite hyperactive and always working around the house and yard. I was never a "sitter". With pmr my visual focus is shaky, now that I think of it. I think I will go and start on some prednisone. Maybe I'll try 5 mg. I used start with 10 and then work down. I'll see how I do on 5 mg. My husband is a family physician and also has a veterinary degree. He went to vet school at Washington State, then to Vietnam where he oversaw the dogs and helped with human surgeries. Then back to the US and medical school. He diagnosed me and leaves it up to me to titrate my prednisone myself. I am an RN from FSU nursing school. I'm 74 and had my initial attack at age 69. I think people should regulate their prednisone personally depending on how they feel.

That sounds great, and I hope the tapering continues to go smoothly! PMR and GCA is so individualized that I think most begin on prednisone but if it’s not as effective in its own, the side effects become untenable or has a lot of difficulty tapering from a relatively high dose, some people need to consider other options. As my dad’s rheumatologist says: “We have to listen to what his body tells us.”

Wow .. what a journey!
Thanks for sharing
Very good information. Hang in there .. sounds like you have it under control. 🙏❤️
I appreciate your response

Interesting that you say that about regulating your own prednisone that’s kind of what I am doing even with the doctor. I read something very interesting that said working with this prednisone and tapering. It is an “art not a science.” I am currently down to 20 mg from 40 mg.. I have PMR/GCA. I carry a a bottle of prednisone with me wherever I go in case I need to up at at any moment. !!!

Interesting as my rheumatologist says that blood markers like CRP and SED rate are brought down to almost zero because of the Actemra …once fully off the Actemra your blood markers will reflect the accurate inflammation

Did you go completely off Actemra and what happened to the GCA markers and your health condition. Did you start getting headaches or an eye problem. The consequences from GCA are so scary.

I love that you carry a bottle of prednisone! Lol. We gotta do what we gotta do 🙂

My dad's doctor (he is the one w/ PMR) said something similar. She said: "We need to listen to what his body wants to do, and follow that as a guide." If only if were easier to know what it was saying sometimes >_<

Hello Everyone! - Just a quick note from @grammy82 who asked me to let everyone know she is doing OK. She has been receiving private messages asking her where she has been and she is unable to respond. She fell when she went to Canada and had a shoulder replacement done on July 10th so it will be awhile before she is able to return to writing and responding on Connect. She is sending positive thoughts to everyone and currently is doing well with no pain.

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

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.