PMR relapse symptoms

@abbeyc Mine came back after 11 years.

I felt stiff for quite some time after I finished my prednisone. The stiffness does not go instantly once off it. I’ve been off it a couple of years now and had no relapse but stiffness tends to be with me in the morning or if I sit for too long. I just stretch in the morning and then I’m fairly fine all day. Exercise is critical to helping get over the stiffness. For me I think it was a gradual improvement and now as I’m a few years older too I think that plays a part in it. Mostly in very good spirits and health other than getting osteoporosis from Prednisone. Weights, Pilates, walking and swimming. Good luck.

@cazwell50 Thank you for reply. It was reassuring to know that the morning stiffness is something that others experience. I have been on prednisone for six weeks for PMR, starting at 20 mg and now am at 9 mg. I don’t have any pain, but I experience hip morning stiffness each day. Was not sure if this is a sign of relapse or just part of the syndrome. Can’t see a rheumatologist until May to ask this question. I have found riding exercise bikes and stretching for about an hour each morning really helps. I started holding each stretch for one minute and have increased it to three minutes. The longer stretches make a big difference.

@cazwell50 I found the same thing. Then 3 years later started developing a pain in my right thigh. Xray of both hips revealed a severe osteoarthritic right hip and moderate left. Probably just age?

@cazwell50 yes thank you. It’s been a few months since I originally made this post and things have improved. I agree with everything you are saying.
I’m glad you are doing better as well.

@tuckerp

I don't think of inflammation as a diagnosis. Just because we have PMR, that doesn't mean the inflammatory cells can only attack in places associated with PMR. When those warrior white blood cells are given the signal to attack, there needs to be a command structure that tells them where to attack. When we have an autoimmune disorder the command structure is compromised somehow. There is bound to be collateral damage in other places that aren't supposed to get attacked.

Here is what artificial intelligence thinks about this:

"Your perspective aligns closely with modern understanding of polymyalgia rheumatica (PMR) as a systemic inflammatory condition rather than a localized one. While traditionally recognized by shoulder and hip pain, the underlying immune dysfunction in PMR acts as a body-wide, "command structure" failure, causing inflammatory cells to attack various tissues, leading to symptoms well beyond the musculoskeletal system."
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Pain is sometimes hard for the brain to decipher too. Those pain signals to the brain can be scrambled so the brain doesn't know how to interpret the signals. Take a look at everything that can cause extreme facial pain when you have trigeminal neuralgia.

"Pain attacks can be triggered by vibration or contact with the cheek (such as when shaving, washing the face, or applying makeup), teeth brushing, nose blowing, eating, drinking, talking, or being exposed to the wind. The pain may affect a small area of the face or it may spread."
https://www.ninds.nih.gov/health-information/disorders/trigeminal-neuralgia
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I have learned to NOT listen to my body because it feeds me a lot of misinformation. It is always better to have pain investigated with x'rays and CT-scans and things of that nature to determine the cause of pain. When I got diagnosed with PMR I started to think that only PMR can cause pain. My thinking got reinforced when prednisone pretty much relieved any type of inflammatory pain.

When my trigeminal neuralgia attacks were more frequent, I thought it was a good indication that PMR was more active. I said those electric shocks were my "inflammation alarm system" which was telling me that too much inflammation was present so I needed more Prednisone. As long as I took enough Prednisone, my trigeminal neuralgia attacks always quieted down although I needed to take a lot of prednisone.

@villager the frustrating part I found is that the doctors could not accurately answer if the pain was PMR relapse or from something else. I believe the doctors kept me on Prednisone much longer than needed because they could not give definitive or convincing answers. Not one doctor brought that you will feel stiffness for a while even when you come off Prednisone. And I saw probably 5 different ones trying to get solid answers.

@abbeyc
The truth is doctors only practice what they are taught in school, the diagnosis and treatment of disease. That’s pretty much all the time allows for in a visit. The rest of our recovery depends on our curiosity and initiative to investigate on our own.
Reading these posts have made me aware that the fatigue and symptoms I feel after tapering off prednisone may not be PMR symptom related but my body readjusting to a life without prednisone.
Having a support group allows us to understand the disease with its twists and turns from real people’s experiences and knowledge. The time we spend at a doctor's appointment is so limited that it does not allow these types of discussions to take place.

@abbeyc
"I believe the doctors kept me on Prednisone much longer than needed because they could not give definitive or convincing answers."
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I believe that I was complicit with keeping me on Prednisone longer than I needed to be. The notion of having "no pain" is flawed because that assumes all pain is PMR pain. Once I realized that I had no clue what was causing all the pain and it might not be PMR ... it became clear to me that other "corrective measures" were needed before I would ever get off prednisone.

I simply didn't want the alternative treatments when prednisone worked so well for everything. I had several other conditions that were diagnosed. I don't know how many times I was told by a doctor that my other conditions weren't treated with long term prednisone. I didn't listen because I thought prednisone worked better than anything else that was offered. I still refuse "corrective surgery" because I know that will cause a lot more pain.

There still needs to be alternatives to prednisone even though it worked for practically every condition I had. I'm grateful for Actemra because now it is much easier for me to sort everything out. Actemra has taken PMR out of the overall picture because I no longer have PMR pain and relapses all the time.

I can tolerate a lot more pain when I know what causes it. Doctors need to be better at telling me what causes my pain. The honest answer is that many times ... doctors don't know what is causing the pain. I try to be understanding when a doctor doesn't know. I tell them if they don't know what is causing the pain ... how am I supposed to know?

@abbeyc good to hear!