PMR flare -Shoulder and neck pain..and headaches

The Kevzara should be trying to keep PMR in check thru the IL-6. But you are butting up against the cortisol restart. Probably the Methotrexate is just being thrown in as a backup to fight inflammation. This next part is not easy but sounds like your trying to make it. Getting off prednisone will help with so many other things. Maybe staying on the Kevzara is good thing if you have any flares.

I'm relatively new to this. I've had symptoms since last fall, finally got an appointment w/ a rheumatologist a month ago, have been on 12 mg. methylprednisolone since. The pain in my legs is much better and I can move better; wasn't able to get out of a chair or walk without a cane before. BUT: 1. I'm exhausted. I can do maybe one thing a day, then I hit the wall. 2. Does stress make PMR worse? Seems to. 3. Is irritable bowel part of this? Or can it be from the steroid? 4. Today had awful pressure in my shoulders and neck, as if something was constricting them or someone wss standing on them. Also was short of breath, fuzzy in the head, and had a feeling something really bad was happening. I laid down and it passed, but it took an hour or so. Is this what PMR shoulder pain feels like?
Thanks. I don't know whom to ask, I've never known anyone w/ PMR, tho' my mother had lupus and my daughter has Ehlers-Danlos vasculitis.

When is your next doctor's appointment? Those things need to be raised with them. Two things:
1. Do you always take the prednisone after food to protect the stomach lining?
2. Do you drink extra water as recommended with prednisone?
Regardless of what is going on, those two things can only help. Talk your symptoms over with your doctor. There could even be an interaction happening with one of your other meds that needs attention.

Thx, will do.

Hi @barracudacool, have you had a biopsy of your temporal artery to rule out GCA?
I ask because my GCA has presented twice somewhat differently from typical symptoms with severe neck pain/stiffness that extended into the scalp, pains on the side of my face, near my ears. Also extreme fatigue, loss of appetite, and a dry cough.
I never had temple or jaw pain. My scalp's been tender to the touch, but never excruciating, as the text books describe.
I was so convinced I just had muscular head and neck pain that I didn't recognize a relapse of GCA until my torso was pretty itchy without a rash, I felt faint in the mornings, and loss weight again.
If you ever have any visual disturbance, go to the Emergency Room immediately.
Taking so much Prednisone (35 mg) is a drag, but it's necessary to manage GCA.
Have you told your doictor about your symptoms?

Yes I contacted my rheumatologist. I am seeing her tomorrow. She’s ordered more blood work but thinks it’s a flare. The pain I had has subsided dramatically and I am feeling better. Stilll at 8mg prednisone. Thank you for the push to contact doctor and to pay attention to the symptoms. We all react to this differently. Your experience is a good caution.

I'm happy to help. Our experiences with this disorder are so varied, but we have to stay vigilant, lest we suffer a severe consequence, like blindness.

You have come to the right place. So many of us understand what you are going through. I haven't met anyone else who has had PMR either, although I suspect my mother might have had it, but there was no understanding or tests for it back in the 50s. I don't want to discourage you but at 5 years total and 18 months in remission, I still have noticeable pain in my neck and shoulders. Don't feel bad about the exhaustion and don't be hard on your self. Cut jobs up into bits size pieces and think of them as jigsaw puzzles, you don't have to do all of the work right away. Now is the time to break out all those books and programs you love and take it easy but try and do at least a couple of gentle exercises a day. The distraction helps.

I'm also very new to the condition and the treatment. I had 5 days of 20mg, and at one point, I felt almost normal- hardly any pain at all. Then 5 days at 15mg, now on 10mg until my next doctor's appointment in a week. Of course, my pain is definitely worse on the 10mg. At least I am not waking up so stiff that I cannot walk. I can pop out of bed like a normal person. That said, the shoulder pain is still very bothersome, and the leg pains are not gone, but they are not as bad. I have no idea where to go from here or what to expect from my Rheumatology appointment. Do I want to go back up in dosage or just stay here for a while and hope it gets better? How does it get better, anyway, since I can tell from this discussion group that, eventually, it will improve? Also, I still have not gotten back into any activity routine. I did a 45-minute workout with my local class via Zoom but really didn't work hard and certainly had some pain afterward, but nothing severe. I'm wondering how to approach reactivation after several months of nothing while this whole PMR thing got figured out. Sorry to ramble, but I really want some guidance on what to tell my doctor regarding the dosage, symptoms, etc, and whether staying at the 10mg for a while is the best road forward (as opposed to going back up to the level where I was so close to pain-free).

Has anyone not had any markers but been diagnosed with PMR based ONLY on symptoms?