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

I was fortunate @artist01 in that the loss of vision was short and only happened twice. If it happened again, I would have gotten an appointment with the optometrist, but I never would have thought to go to the Emergency Room. When GCA was suspected, were you prescribed prednisone?

@tsc. No, Teri. Even though I had been to Emergency five times because of right temporal and scalp pain, GCA wasn't on the doctors' radars until I suddenly loss most of my right eye vision. THEN I was hurried off to hospital Admitting on an emergency basis, direct from a specialist's office! It happened to be my birthday and the doctor wouldn't even allow my friend and I to stop for a burger on the way! I was put on 1000 mg Prednisone by I.V. for 3 days to save my "good" eye from blindness.

Please do not wait with the eye problems. It is imperative that you get help immediately.

You are so right, @tillysam. I have a tendency to minimize my symptoms whenever I can. I am fortunate that it did not have disastrous consequences for my vision.

What I have learned is that we have to be on top of things so that nothing disastrous happens. Not sure of something, call your doctor. Do not put things off.

Agree. I am fortunate to have a doctor who believes that his patients are his greatest source of information. We work as co-creators with his medical knowledge and my body health self-awareness. I hope this doesn’t sound arrogant but I really do believe that we are entitled to be our own advocates for our health and well-being. Mayo Clinic is an amazing source of information And I try to gather as much information as I can to be informed

Hello everyone. I’m so happy to have found this place. I have had symptoms of PMR and GCA for months now. Been to 2 rheumatoid drs and no diagnosis. If fact, my long time rheumatoid dr left and the new guy took me off my meds without even seeing me or a phone call 😡
I feel like I’m dying. I told this to my last Dr at my evaluation. My blood results came back showing nothing and I was referred to pain management 😳🙄 ( august 24th)
I don’t know what to do or where to go. The headaches and pressure in my neck…and the back and arm pain are bad.
Will pain management be able to diagnose me? And treat me? I’m so frustrated 😤

Hi @dmoonchild, autoimmune diseases, like PMR and GCA, are notorious for being troublesome to diagnose. You only have to see these related discussions to realize that you are unfortunately not alone in your pursuit of a proper diagnosis and how to get one.

- Is everyone here diagnosed with PMR seeing a rheumatologist? https://connect.mayoclinic.org/discussion/rheumatologist-1/
- Do I really have PMR? https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/
- PMR initial diagnosis: Can there be an underlying disease? https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
- Were you misdiagnosed with PMR? What was your diagnosis?https://connect.mayoclinic.org/discussion/misdiagnosis/

I'm sure @pickle7 @tsc @novabill @marilynredder2367 @milld835 @susan63 @microbe1943 @lmoross and other members can share stories and tips with you too.

Moonchild, did your new doctor explain why she/he took you off your medications or explain that they ruled out PMR and why? Did they tell you what they think is going on and why the referral to pain management?

Hi @moonchild, I suffered with PMR (pain on a scale of 10 out of 10) for four months, full blown and my inflammation markers, ESR and CRP, were only slightly elevated so I wasn't diagnosed. I then got terrible neck stiffness, scalp tenderness, short little stabbing pains on the side of my head, anorexia and anemia. Nine months after the first blood work my ESR and CRP were off the charts. I had a temporal artery biopsy and was diagnosed with Giant Cell Arteritis and put on 40 mg of prednisone. I'm down to 1 mg now.

Were you ever prescribed prednisone and did it help? Usually the dosage for PMR is 15 -20 mg and the relief is often described as "miraculous." The dosage for GCA is higher. It's serious - untreated it can cause stroke or blindness. Have you had problems with your jaw when eating, unable to chew, or difficulty seeing? Has any doctor ever suggested a temporal artery biopsy?

If symptoms don't respond to prednisone, it could be an infection, malignancy, connective tissue disorder or hypothyroidism. I got this information from a diagnostic algorithm for PMR from Cecil and Goldman's Textbook of Medicine.

I hope you get some relief and find some answers soon.

Sorry you are going through this. I was in pain for a year with nothing showing up in blood tests. And then they did show up. My numbers were so high and my husband, who is an Ophthalmologist, was extremely concerned about my eyes. This has been a roller coaster ride that I can’t seem to get off. Make sure you are In good hands and always good to get a second opinion.