The Mysterious Ailment That Caused Me Months of Pain

A tricky puzzle

Even though PMR is relatively common — it affects 50 per 100,000 in people age 50 and older,  and it’s even more common in those over 70 — it can be difficult to diagnose because there is no definitive test.

“When presented with these symptoms, you must do a workup for any kind of inflammatory disease, lupus, RA [rheumatoid arthritis], gout. Also, look at where the pain is originating. If it’s wrists, fingers or ankles, it’s not PMR,” Gordon says.

The other issue is that the pain comes from the muscles, not the joints, and many patients can’t tell the difference. Therefore, they can’t describe their symptoms in enough detail to give doctors the necessary clues. In my case, since I thought the pain was due to my arthritis, I went straight to the orthopedist.

There is no specific blood test for this disease. My heightened c-reactive protein and erythrocyte sedimentation rates only showed inflammation, but not what is causing it. Now we must figure that out.

To try to understand more about my condition, I call Eric L. Matteson, M.D., a rheumatologist and epidemiologist with the Mayo Clinic College of Medicine in Rochester, Minnesota, who has done a lot of research on PMR. “It's a very tricky diagnosis. Even your family doctor and internist often get fooled by it, although they're more tuned into it than surgeons, and your orthopedist is a surgeon fundamentally,” he explains.

He says that there are other diseases that mimic PMR. There are also cancers that can mimic it, such as non-Hodgkin's lymphoma. In my bloodwork, Gordon checked my white blood cell count. It was fine, which thankfully ruled out cancer.

Finally, a likely diagnosis

Gordon says one way to help recognize the condition is to put patients on prednisone, a corticosteroid which helps reduce the body’s immune reaction by blocking inflammatory response. She explains: “Other inflammatory arthritis diseases require much higher doses of prednisone initially and then require other medications to control the disease., whereas PMR only needs the prednisone 20 mg or less and is tapered off.”

“While many conditions, especially inflammatory ones such as rheumatoid arthritis and a host of others, respond to prednisone at least for a time, experts studying the disease consider the response helpful but not diagnostic. Therefore, keeping track of your symptoms is vital for you and your doctor,” Matteson says.

Matteson also confirms my suspicion that physical therapy was making the pain worse, because I was exercising with already inflamed muscles that needed rest. Instead, I do very light stretching in the morning and listen to my body if anything starts to feel painful.

Gordon prescribes the drug at 20 mgs, saying I should see a change in a day or so. Regrettably, the next two days only bring a little relief. On the third morning, however, I am up and out of bed before I realize I have done it…without pain. None. Zero. Zip. I could dance a jig with joy.

She recommends I go see a rheumatologist, Bret Sohn, M.D., in Stamford, Connecticut, to manage my case. At my appointment with him, he is pleased with my progress. He tells me to continue taking the 20 mg dose for two weeks and then check in again.

Remaining vigilant

Sohn explains PMR is more prevalent in people over the age of 50 because our immune systems change as we age. “The regulatory cells that keep our immune systems in check don’t seem to work as well. Overactive immune reactions to stressors such as infections, environmental changes, or even vaccines could trigger the initial inflammatory insult.”

Also, that the disease can be different from person to person. “Some can be off steroids in three months. In others, it can take years. I try to give everyone a ‘try’ at getting them off steroids at three months, but many times, we need to taper slower,” he says.

So far, I remain pain-free, and under Sohn’s guidance, I have started to wean off prednisone. He explains that I must come off slowly to make sure the inflammation doesn’t kick up again, so I decrease by 2.5 mgs every two weeks. By August, I take a walk without having to stop every 10 steps to shake out my knees. Score one for me!

He warns me that if the pain starts up again in a meaningful way, I should call him, but to go to the emergency room immediately if I start having vision troubles or bad headaches.

Once off steroids, relapses can happen as frequently as 25 to 30 percent of the time, Sohn says. But flare-ups happen most frequently in the first month a patient has gone off steroids. Over the ensuing weeks, I manage to hold steady. I have the occasional aches and pains, but they do not last long and react well to some basic Tylenol. (I also stare at the offending body part and warn it: “Don’t you even dare.”)

In September, I returned to my aqua aerobics class, which is not only good exercise but also light on the muscles and joints.

Still a mysterious disease

I ask Matteson what causes PMR, and he says that it is still considered idiopathic, which is a fancy doctor term for no known cause. “For the most part, we can't really say what is the exact trigger, and that is true of most autoimmune diseases, including rheumatoid arthritis and lupus.”

Experts do know, however, that is a chronic disease. “We have patients who have had symptoms of PMR for 10 years or more. They have been on prednisone the whole time — usually though, after three to four months, at a very low dose," he says.

Patients can go into remission, meaning they have no symptoms, but that is not the same as a cure. “It’s more that it is dormant, but it can come back,” he says. Oh, joy.

New therapies

The good news is that there is a new therapy, Sarilumab, that can help patients who have bad reactions to prednisone. At higher doses (40-60mgs), prednisone can cause some significant side effects including blurred vision, headaches, mania and mood swings. But I am starting at a low dose, so my mood and energy levels remain stable.

Others new treatments are currently under development, but they are not yet approved, and studies are still underway.

Mystery solved

By the end of October 2024, I am almost off the prednisone when I have a little bit of a flare-up. Sohn assures me that this is common and advises that I return to 5 mgs of prednisone a day and taper off more slowly. Gordon, Sohn and I will keep an eye on future relapses and medicate as needed. As Gordon says, “Medicine is an art, as well as a science.” 

But I am so far from where I started back in March that it seems miraculous to me. I may never be completely in the clear, but considering where I started, I’ll take it.