Adjusting to life with temporal arteritis

@mark2471
Hope you are doing well and looking forward to Thanksgiving! 🦃

I saw a Rheumatologist for the first time today about my GCA-like symptoms. As we discussed, my ESR and CRP results remain very "low normal." When the Rheumatologist felt of my temples, he said there were no swollen, raised, firm cord-like arteries, which he would have suspected. Did you have these physical symptoms in your temporal arteries? I got the clear impression that he does not think I have GCA or Polymyalgia Rheumatica. He ordered an arterial ultrasound to "rule out" GCA. When I asked him what else might I have if not GCA, he just shook his head and said he didn't know. I guess I was fortunate to get the specialty arterial ultrasound scheduled for December 3rd. He told me to stop the 15 mg of Prednisone. He said, as you did, that 15 mg is a completely ineffective dosage. But he did say that if my symptoms intensify after stopping the Prednisone, to call his office immediately. 🙄 I guess he is pretty confident I don't have GCA because he did not order 40/60 mg of Prednisone for me. I have 🤞🏻 for the ultrasound. Take care.

Am very sorry to learn of your diagnosis. I've had Temporal Arteritis (GCA) for 7 years. The length of time for recovery is different for everyone. Please don't panic and think you'll be at this for a long time. It's different for different patients. It is very important to have a temporal artery biopsy to support the diagnosis. The first line of treatment for GCA is Prednisone. This drug will reduce your bone density and has many other potential risks. The goal should be to manage the disease with the least amount of Prednisone possible. Tapers of the drug must be done slowly and with supervision in order to prevent adrenal failure, so never just go off Prednisone just because you're feeling better or frustrated with slow recovery. Most people improve quickly when Prednisone is introduced. Then recovery slows with the taper. It would be helpful to know more about your diagnosis and meds. Most info on this autoimmune disorder is on elderly patients. I was in my 40s when I was diagnosed, so I've come to learn things are different for me. This means protecting bones is much more critical. The link you received is excellent in that it points out how important diet and exercise are to protect you from osteoporosis, high blood sugar (Prednisone raises this) and other issues. Are you seeing a Rheumatologist? If you are not seeing a specialist, you should consider it. Have you had a DEXA scan. This should be done early and monitored regularly to see if you need to be on bone supporting drugs. Please tell me you're on calcium! It is critical to get enough calcium with Vitamin D3, magnesium and other essentials to protect your bones at least some. Some things you need to do your homework on and that insist on. Did you know you are more prone to infections on Prednisone? This means preventative care like a flu shot is important. Depending on how much Prednisone you're on, you may need protection from different kinds of Pneumonia. Please take time to keep doing what you're doing. Ask questions, seek answers and become the best advocate you can be.

I empathize with your concerns following your diagnosis with GCA. I was confirmed with GCA in mid-October, and immediately put on 50 mg of prednisone daily. It probably started a few weeks previously. ( I had developed PMR symptoms over the summer, but ignored them until mid-September. ) I also responded very quickly to the prednisone, and the symptoms rapidly, or gradually, were gone. I am currently on 15 mg daily, have been since the beginning of November, and hoping to soon reduce again.
I have had one virtual visit with a rheumatologist. He appears to be a man of few words, so I did not get much of an idea what to expect in the future. This is the great puzzle for me, as I do not know, when I seem to be experiencing symptoms, if they are part of the PMR/GCA package, or a result of the prednisone, or just me aging. For example, I have developed slight shaking of my hands, which I do not remember experiencing before. I am wondering if this is something others have also experienced as part of the PMR/GCA/prednisone journey? There seem to be more questions than answers when dealing with PMR/GCA.

I empathize with your concerns following your diagnosis with GCA. I was confirmed with GCA in mid-October, and immediately put on 50 mg of prednisone daily. It probably started a few weeks previously. ( I had developed PMR symptoms over the summer, but ignored them until mid-September. ) I also responded very quickly to the prednisone, and the symptoms rapidly, or gradually, were gone. I am currently on 15 mg daily, have been since the beginning of November, and hoping to soon reduce again.
I have had one virtual visit with a rheumatologist. He appears to be a man of few words, so I did not get much of an idea what to expect in the future. This is the great puzzle for me, as I do not know, when I seem to be experiencing symptoms, if they are part of the PMR/GCA package, or a result of the prednisone, or just me aging. For example, I have developed slight shaking of my hands, which I do not remember experiencing before. I am wondering if this is something others have also experienced as part of the PMR/GCA/prednisone journey? There seem to be more questions than answers when dealing with PMR/GCA.

@lally I was diagnosed with PMR and possible GCA in July 2024. Started on 60 mg. of prednisone. I didn't start tapering until early September 2024. In October, I had had tremors both at rest and when I was eating. In the past, I would have an occasional hand tremor, but they weren't common. I have a family history of parkinson's and essential tremors (both parents). The tremors after I started taking Prednisone were more often. Even, when I tapered to 0 mg. at the beginning of November 2025, I would still have occasional tremors. Not as frequent, as when I was on Prednisone. I had a slew of side effects while taking Prednisone. I figured the tremors were just another one.

@mark1952
Thank you, I continue to be pain free with respect to both PMR/GCA while tapering prednisone, now down to 10 mg. Am looking forward to Thanksgiving, one of my favorite holidays. I am hoping that you do not have GCA and will continue to send prayers your way.
My GCA started suddenly a few days after I completed an 18 month prednisone taper for PMR. I had mild pain and tenderness in both the right temple area and the right temporal artery. I could feel the pulse just in front of my right ear, but it felt just like any other pulse to me. I did not have the jaw claudication also frequently mentioned to occur with this, it’s kind of like a muscle cramp in the temple area with chewing. No swelling in the artery that I could detect, and the US was normal after 2 weeks of treatment, which I expected would be the case since my pains resolved completely within 12 hours of the first dose of prednisone. I did develop painless swelling over the middle of the right eyebrow which is still present. My doctor doesn’t know what this is and is sending me to see another specialist about this next week. Anyway, good luck, and I will keep you posted.