Three Women Share Their Stories of Living with Polymyalgia Rheumatica (PRM)

Polymyalgia rheumatica (PMR), is chronic inflammatory disorder that causes pain and stiffness but not swollen joints. It can co-occur with another health problem (giant cell arteritis) and tends to affect women more than men. Here, three women share their stories.

Pain and stiffness, but not joint swelling, characterizes PMR.

Polymyalgia rheumatica can come on suddenly, and for Susan Stern, it did just that. The retired sociologist from Washington, DC remembers waking up one morning in June 2020, unable to get out of bed because she was in so much pain. She got her PMR diagnosis just a couple of days later.

For others, PMR comes in the wake of other health conditions. Kathleen Kaiser of Wichita, Kansas already had a host of other challenging disorders when she started having PMR symptoms and soon learned she had the disorder. And Michele Bausher of Reading, Pa, learned she had PMR and soon after that, a related condition known as giant cell arteritis (GCA).

These three individuals tell how they manage the daily challenges of PMR and what helps them get through the day.

Movement Is Her Medicine

About a month before her PMR diagnosis, Susan had noticed that her shoulders were very painful when she and her husband, Paul, were dancing. They had been participating in a Cuban form of dance called Rueda de Casino for about 15 years with a group of friends, but gradually her shoulder pain got worse, and she and her husband had to stop dancing.

Eating an anti-inflammatory diet and working hard with a strength coach helped Susan Stern return to a Cuban-form of dancing she and her husband enjoy.

Then came the morning in June 2020 when she was in such horrendous pain that she was unable to get out of bed. Her husband got her up and into the car. They drove to the local emergency room, but the wait was too long. Susan was in such pain she couldn’t keep standing and couldn’t even sit down.

Finally, she left, and her primary care doctor told her to come in immediately for blood tests. She was soon diagnosed with PMR, and the rheumatologist urged her to start prednisone immediately.

But Susan was determined to avoid prednisone.

“I had to push back pretty hard with my doctor,” she said. Her rheumatologist gave her two weeks to try another form of therapy before insisting on prednisone.

Susan’s dance friends told her about a flexibility and strength training coach who works with athletes to rehabilitate their joints, muscles and tendons. She immediately began twice-weekly sessions with him. Within two weeks, her pain began to subside and her inflammatory markers decreased by one third. Four months later, her blood work was normal.

“I am not completely well but I am almost all better,” Susan says. “Right after my diagnosis, I took two ibuprofen each day. I also used ice and I began some anti-inflammatory protocol dietary changes, but the exercises brought down my disease right away.”

Susan continues her appointments twice weekly with her coach. “His approach is that you strengthen the areas that are already strong as well as those that are not as strong,” she says.

She has found that her coach’s targeted flexibility and strength exercise has made her almost pain-free. “Movement is medicine is what my coach tells me,” she says. “It decreases pain. But it doesn’t decrease the pain immediately, so you have to delay gratification and do the therapy and the exercise in order avoid the long-term effects of prednisone and feel better.”

She doesn’t eat red meat or shellfish, but gets her protein from chicken, turkey, and eggs. “For the most part, I am leading a normal life,” she says. And she looks forward to more dancing with her husband and their friends. “My shoulders aren’t strong enough yet so I don’t want to push it,” she says “But my legs are strong. I hope that we can start dancing again soon.”

When Giant Cell Arteritis Develops

In the fall of 2018, Michele Bausher, a retired corporate mailroom clerk in a large department store, was being treated for some skin issues when she started to get aches in her shoulders. Her skin doctor recommended that she see a rheumatologist, and after the doctor did some tests and listened to her symptoms, Michele was diagnosed with PMR. Her doctor put her on prednisone initially, but she gradually stopped taking it over the next six months. Although her pain returned, she opted to not go back on prednisone.

But by October 2019, Michele had developed jaw pain and headaches. These are symptoms of giant cell arteritis (GCA), a disorder that causes inflammation of the blood vessels. About 10 to 20% of people with PMR will develop symptoms of GCA.

She learned that she had GCA, and like many other people with this condition, Michele began taking Actemra (tocilizumab), which has been helpful. She is still taking prednisone as well but hopes to stop it soon. (She and her husband have two children, five grandchildren, and one great grandchild.)

Now she tries to follow a healthy diet that includes supplements such as turmeric. She walks and uses her exercise bike regularly. “Sometimes it is very hard to keep going, but every day, I get up and push through the aches and pains,” Michele says. “One of the ways you are going to win this battle is to keep moving.”

Severe Pain and Desperation

Kathleen Kaiser, 59, of Wichita, Kansas, learned in June 2016 that she had PMR. “I was already in a lot of pain from other conditions such as osteoarthritis and many herniated and bulging discs in my back when I developed pain in my upper thighs,” she recalls. “My GP did some blood work and found that my markers for inflammation were really high.”

It took three months for Kathleen to get an appointment with a rheumatologist. After her diagnosis, Kathleen was told to start on prednisone. But she soon experienced side effects such as weight gain. She broke two bones in a fall in February 2018 so she had a bone density scan in April 2018 that showed that she had osteopenia.

In August 2018, she broke six vertebrae in her back and also suffered a broken rib. The doctors realized she had severe osteoporosis, which can be a side effect of prednisone. Susan stopped taking prednisone in May 2019 and tried various other medications. But nothing she tried was helpful.

Meanwhile, after increased scrutiny of physicians’ opioid prescribing, Kathleen’s pain medication for other health conditions was cut back substantially. She was in so much pain that she tried to end her life in February 2019 by taking a lot of morphine and oxycodone.

Her husband found her, and she was placed in the ICU. After discharge, her pain practice specialist refused to treat her any longer, and Kathleen had to treat her own pain with over-the-counter pain relievers, heat and ice, and a TENS unit. In December 2019, a new pain specialist took her as a patient and implanted an intrathecal pain pump through which she is able to get a small amount of morphine. “Fortunately, this is enough to take the edge of pain,” she says.

While the pandemic has meant that Kathleen could not get into her doctor’s office to get refills for the pump and have her dose of morphine adjusted, she is now able to go to the doctor when she needs to, and is on a dose of morphine that allows her to manage her pain for the most part.

In September 2020, her doctor agreed to give her two hydrocodone daily for pain. “It helps augment the morphine in the pump,” she says. “But it does nothing for the PMR pain and at this point, I am just sick of the pain. There is nothing I can safely take so I just have to live with it.”

She takes two Excedrin daily for the pain and stiffness of PMR. She uses a scooter because her back is so sore, and does a lot of canning in her kitchen. (Her nine-year-old granddaughter recently helped her can multiple jars of apple pie filling.)

Fortunately, Kathleen has joined a couple of support groups and she is also in individual therapy, both of which she says have been very helpful. But PMR has really impacted her life. “PMR has a real effect on my muscles,” she says. “And I am just so tired all the time. If I lay still for more than a few seconds, I have stiffness.”

Updated on: 09/22/21
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