Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Was Thursday the day after a crossfit session? Even on prednisone with fairly well controlled joint and muscle pain, I always wake with extra joint aches after doing a little more gardening than usual, or after trying out a new light exercise to help mitigate muscle deterioration.

wilmigtonemperor, after reading a lot of discussions on this site, it is evident that no two stories are identical. Similar, but everyone's story seems to take a 'twist'.
IMO your anemia is causing your elevated sed rate. In the last few years my H&H has dipped into the slightly anemic state with flares but returned to normal when my inflammation was under control. Abnormal lab test results seem to normalize as inflammation decreases. I have standing orders for monthly crp and sed rate. My crp is more sensitive than sed rate. With every flare my crp is abnormally elevated, sed rate elevates but not to the extent it's in the abnormal range. And I have had hand, wrist involvement. Perhaps you should have xrays. My latest flare involved my hands, not my hips and shoulders like in the beginning of my pmr journey. I seem to have developed inflammatory arthritis, synovitis, along with osteoarthritis in my hands. My rheumatologist is postulating prednisone tapering triggering an autoimmune response. Vicious circle. I went back up to 10 mg in July, now at 7 mg. Find as many anti inflammatory foods you enjoy eating. The osteoarthritis in my hands is not going to go away. I'm trying to ward off the swelling I had this last flare.
Sometimes I ice my hands later in the day, heat in the morning, gentle hand exercises, low impact exercise. I focus on more healthy foods than I used to eat. I focus on meal planning. Simple things like picking a healthier bread, salad dressing, cereal, fruits, lower fat lower salt snacks will help lessen inflammation. Read labels.
suzanne

"My rheumatologist is postulating prednisone tapering triggering an autoimmune response. Vicious circle. I went back up to 10 mg in July, now at 7 mg."

Can you explain what your rheumatologist means by this?

It seems like 7 mg of prednisone is a tough dose for many people. My personal belief is that 7 mg isn't enough prednisone to regulate inflammation. Prednisone replaces the cortisol that your adrenals should produce.

Approximately 5-7 mg of prednisone is the equivalent to the "physiological amount of cortisol" that your adrenals need to produce on a daily basis. Cortisol is an essential hormone that affects almost every organ and tissue in your body. It plays many important roles, including regulating inflammation.

My guess is there begins to be a shortfall of cortisol caused by prednisone induced adrenal insufficiency. This in turn results in the body's inability to regulate inflammation. We either increase our prednisone dose or face the consequences of adrenal insufficiency.

Yes ... it does become a vicious circle:

Not taking more prednisone causes unregulated inflammation and inflammatory pain.

Taking more prednisone continues to suppress adrenal function. This causes adrenal insufficiency which can be painful too.

Here's what happened at my last visit at the rheumatologist: the practice is associated with a large university medical center. My Dr is also a professor and has a 'fellow' in training. It was her first day. She did the routine questioning assessment of how I was doing, had a discussion with my Dr and then they both came in the room. So besides asking ME questions, THEY were having a conversation about pmr treatment, what can go wrong and why. My pmr seemed to be gone and the inflammation attacked the joints in my hands. Maybe because I already had osteoarthriti in those joints.Paraphrasing what he said to her was .... How many times have we seen tapering trigger inflammation somewhere else. My hands were visibly swollen. They said I need more than prednisone and suggested methotrexate.
This whole cortisol thing has never been brought up at any of my appts. I will ask some questions at my next appt. which was s in Oct.. My appt is with the new Dr, not sure if my reg Dr will be there also.

Thank-you for your reply.

My appointments over the years at a large university medical center were just like your appointment. I almost always had a fellow and a professor in rheumatology as my staff doctor and sometimes 2 staff rheumatolgists. They all seemed very interested in my case and I liked all of the attention. The educational discussions they had with the fellow were educational to me as well.

The cortisol thing is more in the purview of an endocrinologist. You might get to see one of those doctors when you get to a lower dose of prednisone. I think there should be joint specialty consisting of training in endocrinology and rheumatology.

I WAS seeing an endocrinologist for several years until a couple years ago when she thought my problem was stable enough for my pcp to order yearly thyroid tests. Back in the 1980s I had what they referred to then as a 'cold' nodule and had surgery to remove it and half of my thyroid on that side. It was benign. I have never had abnormal thyroid tests (knocking on wood). But down the road I developed what she referred to as benign nodular thyroid if I remember correctly. She did her own sonograms in her office. I had multiple thyroid sonograms. She was also ordering my bone density and reclast infusions. So if necessary, I can go back there.
She is an excellent Dr.
suzanne

I won't pretend to know anything about thyroid function. However, the thyroid, the adrenals, cortisol levels combined with autoimmune disorders like PMR are potentially an endocrine problem just as much as a rheumatology problem. Your medical history sounds complicated.

Seeing your endocrinologist again might be a good idea. Maybe a followup visit or send her a note to let her know that you have been on prednisone. It sounds like you are having difficulty tapering off prednisone. Depending on how long you have been on prednisone, you will probably need an endocrinologist eventually.

When people take prednisone for a long time and have difficulty tapering off prednisone, the chances of an endocrine problem are more likely. That is why I see an endocrinologist.

At the very least, it would be interesting to see what your endocrinologist says.

Thanks for the post. I am new to PMR having contracted it at 78, but have long noted that sugar intake increases inflammation. Having recently lost my husband, I took to self comfort with poor eating habits, and am in the process of revering that.

Hello @1sunny, Welcome to Connect. I'm sorry for the recent loss of your husband. That has to make dealing with PMR that much more difficult. I'm happy to hear that you are in the process of changing some eating habits. That was also one of my more difficult things to do but it really helped shorten my second time around with PMR and I'm hoping it helps keep it away forever.

There are many other discussions in the Polymyalgia Rheumatica (PMR) Support Group that you might find helpful in dealing with PMR. Here is the list of discussions if you want to take a look - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

Do you find that some stretching and a little exercise helps in the mornings to get rid of the stiffness when you wake up?

Has anyone had any experience with PR when you have had knee replacements? It seems like it should make walking easier but not sure that is the case. Just wondering……