PMR diagnosed but now headache for almost a month.

I actually had a headache and blurry vision at the beginning of my prednisone treatment. Once my own cortisol production was shut down, the headaches subsided, but the blurry vision persisted. I think it is a bit better now that I am almost down to 6mg (from an initial 15). I was told by my ophthalmologist that blurry vision is extremely common with prednisone, as are headaches. It is so difficult to differentiate between GCA symptoms and prednisone side-effects.

Hi@samara66, The short stabbing pains were mostly on the right side of my face and went from my ear to my nose. They were lower than the temple, and very short, like little flashes of lightening. They started a few months prior to my diagnosis and increased over time.
I had been prescribed a low dosage of prednisone a few days before I saw the rheumatologist via Zoom. The day before our meeting I counted 25 of the pains. When I told him about them he told me to take 40 mg of Prednisone and scheduled a Temporal Artery Biopsy on the right side of my face.

My mother in law had GCA, and she had a constant headache and jaw pain so b ad she couldn't chew her food.

Do you have short stabbing pains in your face or head?

Thanks for your reply! About a month ago I started having fleeting stabbing pains in my left temple. They lasted only seconds and I’d have two to three episodes a day. Then about two weeks ago I started having tooth pain while chewing. I was so disconcerted about this I contacted my gp and endodontist. The chewing pain seemed related to one tooth only and the stabbing pains in my temple stopped. Since I am still on 7 tapering to 6mg of prednisone, if it is GCA, maybe that is enough to control it for now. Not really sure how to proceed from here, but the possibility of GCA looms large.

Untreated, GCA can cause stroke or blindness so keep that in mind. I also had symptoms that came and went - a very itchy torso, no rash, for a couple of weeks, able to see only white out of my right eye three times, extreme fatigue, a constant pain and stiffness in my neck that extended up my head on the right and left sides of the skull, a dry non-productive cough that started after dinner and lasted through the evening, and my scalp was tender to the touch. Like you described, the short stabbing pains started with a couple a day, then increased over time. I'm so glad I had 25 the day before I met with the rheumatologist. He asked me if the low dosage of prdenisone had cleared my symptoms 100%. I said that it was closer to 60%.

Have you mentioned the short stabbing pains to your treating physician?

@tsc mentioned the risk of stroke or blindness…it’s a very serious risk.

My dad had a stroke two weeks after getting prednisone from his PCP and after just one visit with a rheumatologist. We will never know if it was GCA-related. By the time he was recovering from the stroke in the hospital, there were other things to contend with as opposed to the temporal biopsy, and they had him on IV steroids. If ever there were a time to not fear being paranoid, this feels like one of those things…

I think it would be best to mention this to your rheumatologist or treating physician if you haven’t yet and it hasn’t resolved? And make sure to specify GCA if for some reason you feel they may not be aware of it.

GCA requires prednisone too, but at a much higher dose, usually 40 mg. Hopefully it’s not that, but it’s risky enough you may want to be sure.

Those were indications of GCA for me, which was confirmed with a temporal biopsy.

Hi samarra66,

I hope you can have the temporal artery biopsy very soon. I had been on 20 mg prednisone daily for 2 weeks when I had my biopsy. I was told that any longer could give inaccurate results, saying you didn't have GCA when you actually did.

Best of luck to you.
Sharon

I had a similar situation due to PMR or "apparent" GCA.

I was on 20 mg of Prednisone, with a long-term headache. It was a feeling of pressure behind my eyes and in my forehead. One morning I woke with the muscles around my eye sockets very sore and the headache/pressure behind my eyes strong. A few hours later, after I climbed a flight of stairs, I started having short episodes (30 seconds) of uncontrollable double vision.

At this point, I upped my Prednisone dosage to 40 mg for the day, and went to the emergency room. The headache and double vision went away within an hour or so. After around 8 hours of waiting in the ER(!) they finally did a CT scan of my head and confirmed that I had not had a stroke and that I did not have signs of Giant Cell Arteritis (GCA) in my head. I'm not sure if the Prednisone treatment I had already received affected the ability of imaging to reveal the arterial inflammation that is needed for the diagnosis. It is possible.

The ER doctors upped my Prednisone dosage to 60 mg/day.

Afterwards, my (new) rheumatologist agreed to monitor my inflammation markers weekly. The 60 mg/day Prednisone dosage was continued. There were additional imaging tests of my entire body that did not clearly reveal GCA, however due to the very high inflammation markers I had previously shown (before going on Prednisone) and the lack of initial good response to 20 mg/day of Prednisone, my doctor said I had "apparent" non-cranial GCA.

60 mg of Prednisone has severe side effects - the worst being very serious insomnia. After about 5 weeks, I began weekly shots of Actemra (tocilizumab) and tapering of Prednisone. Once I reached 20 mg/day of Prednisone, my sleep returned.

I had never experienced long-term sleep deprivation before. It is devastating.

I am now down to 5.5 mg/day without relapse, as I continue the weekly shots of Actemra. Actemra has been very effective for me, with almost no side effects, other than a slight raise in my liver scores (ALT). My health has returned to near normal (considering that I still have PMR/GCA). I am taking daily walks with some light jogging of 2-3 miles over the hilly streets where I live, plus lifting weights 3x a week, plus eating carefully, and getting LOTS of sleep.

In my case, the doctors felt imaging, without a temporal biopsy, was adequate to determine if I had cranial GCA or not. I received CT scans of my head and nuclear magnetic resonance imaging of my entire body. The NMRI was primarily done to rule out cancer, however.

I live in San Francisco and the medical system is pretty good by US standards.