Feel abandoned

Has your doc allowed you to increase the Prednisone to see if you pain diminishes/disappears (indicating it is likely that PMR has still got hold of you)?

A second opinion might be a good idea, if that is a possibility for you.

Hang in there.

I have had the same experience. No pain at 10mg. The pain began to reappear somewhere after that. I'm at 4.5mg now. My rheumatologist checked my markers at 6mg and told me the returning pain wasnt the PMR. It is. I think we know our bodies. She sent me for shoulder X-rays, and it showed mild arthritis, but this is more than that.
I'm not familiar with Hydroxy. Do you have good days and bad? I'm hoping as I reduce the medication, my body is learning to produce the right amount of cortisol.
But I get it. Very frustrating. And not many people are familiar with PMR so not a lot of compassion.

I wasn't going to tell my story right away, but your post changed my mind. I was first Dx with PMR in 2019. I kept telling my Rheumy I did not have the classic symptoms of PMR. she ignored me. Skip to September 2025, I was diagnosed with vasculitis in my aorta. I suggest you push for tests for vasculitis, know there are 25-30 types of vasculitis, so there are different tests. To find mine they did a PET Scan. My your journey be short and successful.

@jabrown0407
I've been struggling with severe pain, high pain level comes in spurts and I call them "flare ups" and not sure if it's from my Hashimotos or I'm pretty convinced I may also have PMR. I've also had had the same crashing headaches my Mom had when she was diagnosed with PMR & GCR (GCR biopsy was good for her, so she was ok with that and no blindness occured).

My SED rate has fluctuated up slightly now and then, not anything "significant" according to my primary and my Rhuemy (thanks for that, great shortened term for them!). My Rhuemy is the one who found the Hashimotos when she was testing for RA, Lupus and other AI's. She listened to me and now we're scheduling ultra sounds of my shoulders and hands (shoulders are the WORST) pain area for me. To check for PMR and RA.

What complicates or I could say "muddy's" the waters with a diagnosis is the fact I have multiple herniated discs in my C-spine as well as my Lumbar, plus pretty significant degeneration. My Spine doc agreed with me when I said I have a feeling my disc is pinching the Ulnar nerve because the pain radiates down to my elbows and pinkies, the pain jumps from one shoulder to the other, from one hip to the other, both hands and both feet typically hurt on the regular. Always the worst in the morning and at night after I've been sedentary for longer than normal during the day.

Movement 100% helps gradually reduce the pain level, hard to move a lot when the pain level is high but I'll force myself. When it's moderate, which can go on for weeks at a time, I can move easier to reduce the pain level since I've become kind of used to it.

I've been Gluten Free and almost completely dairy free (maybe couple tablespoons of creamer if my gut allows for coffee or tea, often it does not). Today I had to kick my daughter out of the bathroom to throw up, comes on quickly. I'm visiting her in Florida, noticed my pain level has been better, I have a feeling its the warmer weather. I love the cold and skiing, it's my passion in life, besides cooking and being outdoors in general. I sound like I'm creating a dating profile, lol, I'm not!

This has been a 3 year journey, first diagnosed with SIBO in 2022, then with Blood cancer in early 2023, my Hemoglobin shot up to 18. Had the BMBX done about 9 months after my PV diagnosis and my hunch was right, I do NOT have blood cancer. We still do not know why my HG went up or why I consistently have rather high levels of pain in various joints. I suspect it may be connected with the Covid vaccine, possibly?

So I'll see what my ultrasounds tell, if there's significant inflammation and I can get back on a dose of steroids to help nip it, I'll be happy. I can't take ibuprofen for a week before the tests, going to be a rough week since that's my pain med of choice besides the Tramadol (I'm ok to take that thank god since it has acetaminophen and not ibuprofen, with codeine), I just don't like to take stronger pain meds if at all possible. They actually hype me up and I don't sleep well, I've got wicked ADHD so I think that contributes to them hyping me up. Opposite of what opiates do to most people and I thank God I don't have the "addictive" gene in my brain. If that makes sense.

Thanks for listening if you had the patience to read all this, it's been a very frustrating 3+ years for me and feeling like my family thinks I'm faking everything for attention. I've distanced myself from them for a bit and rely on my best friend and cousin to keep my sanity. Nearly constant pain kind of gets to you after awhile and with no diagnosis for the levels of pain and my hemoglobin ticking up out of normal range, is frustrating beyond anything I've experienced.

The Mayo forum has been invaluable to me, thank you to everyone who contributes. I have always believed in, it takes a tribe, you're all my tribe - thank you.

-Wendy

@wendy517
Isn’t it possible that the pain and inflammation you are experiencing is causing your see rate to go up and maybe not a symptom of PMR?
I was of the impression that an elevated sed rate doesn’t always indicate PMR.
Best wishes you find an answer.

Hi,
I'd been told they're looking at my SED rate for any AI, PMR being one they're testing for with the ultrasounds of some joints, RA and Lupus being 2 others they're suspecting could be the cause of the joint pain.

My Rhuemy did agree, my normal SED rates don't necessarily mean I don't have another AI besides Hashimotos.

Thanks, be well 🙏

Sounds like a flare. I would try to get a low dose of Prednisone to see if it helps. I know prednisone masks a lot of different problems but at least it will give you some relief until they figure it out.