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

TY! I’m so glad I found this support group. I hope you keep your weight up.

What were your GCA symptoms? My rheumatologist doesn't think I have it but I'm not so sure.

I had low grade fever, night sweats, pain in my cheek bones, scalp tenderness, a lot of fatigue in my jaw muscles when I was chewing, and eventually temporary vision loss in one eye. I got treatment in time to save my vision.

I also had low grade fever, night sweats, scalp tenderness, and frontal headaches. No jaw issues at all. A right temporal artery biopsy was negative.
I was diagnosed with PMR. Doc doesn't think I have GCA.
I'm tapering Prednisone, now at 5 mg. and woke with night sweats 2 nights ago. Frontal headache as well. My fear is they've missed something. I continue to have scalp tenderness but seems to be of no concern.

Have they tested you lately for inflammation - ESR and CRP?

I had neck and scalp pain, jaw fatigue upon chewing, some tongue involvement when chewing, headache, temporal tenderness.. CRP and ESR high, just outside normal range, so started on 50 mg prednisone, (later to 60) GCA suspected. Referral to Rheum..who sent me to Univ of Wash. GCA “fast tract” clinic for temporal ultrasound (they provide immediate appointment due to danger of vision loss with GCA). Ultrasound confirmed GCA. Over 3 months later, prednisone taper, down to 17.5 mg for one month, reducing 2.5 for each month. ACTEMRA infusions once monthly. Initial symptoms disappeared shortly after start of high dose prednisone.

I am on day 29 of a 60mg Prednisone Rx, trying 55 in two days. I had a TAB procedure 3 days ago and waiting for the results. I was started on 15mg prednisone two months ago and it went to 20, 25 and then 60 after an ER visit, where I was made to wait for 7.5 hours to see a slightly incompetent ER doc. ER intake staff here in my town are not adequately educated on the urgency of a GCA Dx. VERY dangerous and frustrating!!

That's too bad you had to wait so long to see the ER doc. I wonder if the biopsy will be positive after taking it so long after you started taking 60 mg prednisone. I had a biopsy the second day after I started receiving 3 daily infusions of high dose methylprednisilone. Is there any chance you could get a prescription for Actemra? I started taking weekly injections of Actemra while I was at 60 mg prednisone, and it has allowed me to taper down to 3 mg later this week with no symptoms or flares.

After 3-4 months on Actemra, my prednisone taper came to an abrupt halt when I reached 3 mg of prednisone. I was told that I shouldn't taper any lower than 3 mg until my cortisol level increased. I waited six months for my cortisol level to improve while staying on 3 mg of Prednisone.

The shocker was when my endocrinologist said 3 mg of prednisone was such a low dose that I didn't need to taper. Stopping prednisone was contingent on having an "adequate cortisol level" more than causing a flare of PMR.

I didn't have a PMR flare as long as I stayed on Actemra. I didn't feel well on 3 mg prednisone but for the first time I was able to distinguish symptoms of PMR from adrenal insufficiency. However, I was never certain that PMR was under control until Prednisone was completely stopped.

It made sense to me that Prednisone replaced cortisol at the start of PMR. Until cortisol replaced Prednisone again, I wouldn't be able to stop Prednisone.

For everything to happen, Actemra had to replace prednisone. My cortisol level wasn't going to improve until I could maintain a low dose of prednisone.

What hasn't happened yet is being able to stop Actemra so that PMR stays in remission. At least I got to zero prednisone after 12 years. My rheumatologist insists it is better to be on Actemra instead of Prednisone.

I just wish that Actemra had been tried sooner rather than later.

Jeff, what were the results of your biopsy?