PMR and Head Drop

Hello @steinmo, Welcome to Connect. I don't have any experience with GCA but I have had 2 different flare ups of PMR. My rheumatologist and primary care doctor were always asking me about my symptoms to find out if I might also have GCA - they wanted to know if I had any tenderness or pain in the scalp, jaw or temple areas or issues with vision/eyes. I think fatigue can also be an indicator. Here's some info that you might find helpful:
--- Fatigue: It Is Not Always in the Head: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10320327/

@tsc, @nyxygirl and others with GCA experience may be able to share their experience with fatigue and weakness in the neck and shoulders.

Did you have a temporal biopsy to determine if you have GCA?

sorry guys - i don't have "experience " with GCA. Head Drop sounds super scary - what kind of specialist treats it ?

Thank you. My rheumatologist informed me that there’s a very high false negative result from the biopsy and therefore recommended the MRI. Unfortunately, (or maybe fortunately) the MRI did not reveal anything. However, I do have tenderness in my temple area. And the fatigue is pretty awful. The rheumatologist does not think, or at least understand the correlation between head drop that I seem to suffer from and either CGA or PMR. I hope it’s not something else entirely.

Hi @steinmo, I've read that the temporal artery biopsy is the best technique for diagnosing GCA and haven't heard of an MRI being used.
I didn't have head or neck drop, but an extremely stiff neck. I couldn't turn my head. Also, extreme fatigue, loss of appetite, a dry cough, sensitivity to the sun, some visual disturbance in my right eye, tender scalp, short stabbing pains from my ear to my nose (25 in a day) on the right side. and severe itching, no rash, on my torso.
GCA can present differently. My mother-in-law had it and her symptoms were night sweats, problems chewing, a boring headache; also, extreme fatigue. I was very familiar with her GCA, but never imagined I had it when I experienced my symptoms.
How are your inflammation markers from blood tests - CRP and ESR?
Has the highervdosage of prtednisone relieved your symptoms at all?
If not, it could be something else.
Also, you may want to consider asking your doctor to reviist the possibility of a temporal aretery biopsy.
I wish you the best.

Thanks.
I’ve got the symptoms on aching in temple and eye. But, it’s pretty mild.
My Crp was quite high, 18. But came down to near normal after prednisone. 60mg. For the past week.
But the neck ache and fatigue are persistent.
I’m hoping the get better.
I appreciate your advise.

I too have never heard of an MRI being used in place of a biopsy. I was diagnosed with GCA and PMR in October of 2017 at 54 years old. My CRP was 87 at the time and I was close to losing my eyesight according to the Rheum. I did have extreme fatigue before prednisone, along with debilitating depression, loss of appetite (I lost 16 pounds in 14 days; who needs a diet 🙁 ) But within days of starting pred, all of the symptoms faded. I never had any sort of head drop as you describe. Matter of fact, I felt like superman after taking pred. Unfortunately we all know that pred just eats up our bones and causes more problems. Hope you and the doc figure this out and feel better.

I had extreme fatigue with my GCA, and scalp tenderness, stabbing pain in my right temple, and could barely open my mouth. Had a negative biopsy. Wished they would have tried an MRI.

Hello. Sorry you're going thru the muscle weakness. The worst pain that I experience now since being dx with PMR last Feb. is my neck cramping occasionally when I'm looking down. Have to raise my head and get thru the cramp 20 seconds or so. I still get transient, low level hip and shoulder pain from time to time especially after physical exertion or the first week tapering down prednisone. I get the neck cramps about three or four times a week. There are soft collars available to help keep your neck up in its place. Maybe that could help. I personally would be asking my doctor to rule out any neuromuscular impairment or other potential causes for the weakness.
Hope you're feeling better soon. Ernie

Thank you. I’m trying to get an appointment with a neurologists now. But they are very busy.

I’ve had massive issues with my neck since being diagnosed. My neck/upper shoulder muscles were in what felt like a permanent cramp. My rheumatologist ordered full neck & spine X-rays. The X-rays showed mostly normal arthritis and disc degeneration for a woman my age. So he sent me to physical therapy. I’ve only had 3 appointments but am definitely noticing improvement. The therapist is concentrating on mild stretches to give me more flexibility. Next will be some easy resistance exercises to strengthen my upper shoulder muscles.