If you’re diagnosed with polymyalgia rheumatica (PMR), your doctor will most likely recommend that you start a treatment of a low-dose glucocorticoid such as prednisone. Most of the time, you’ll get better. But sometimes your symptoms don’t improve, or even get worse. And about half of all people with polymyalgia rheumatica eventually relapse.
If you do notice that symptoms return, or worsen, it’s very important that you let your doctor know. PMR often worsens if it’s left untreated. You may get stiffer and stiffer, until you can no longer go to work, run errands, do things with your family, and generally do all the activities of daily living. But with the right treatment, your symptoms should get better, and you’ll be able to live your life much in the way you’re used to.
Why Has My Polymyalgia Rheumatica Gotten Worse?
It’s often a mystery as to why your PMR can suddenly come back or get worse. But there are a few theories:
Certain illnesses. New cases of PMR happen seasonally, which suggests that infections may be behind them. Some studies suggest that cases of polymyalgia rheumatica may be triggered by certain viruses, such as the flu and certain forms of pneumonia.
In a few cases, flare-ups have also happened after getting certain vaccines, such as the one for COVID-19. But there’s not enough evidence to know for sure.
Sudden injury. Some case reports have found that patients with PMR notice a flare-up of symptoms after a fall. It’s thought that the accident causes your body to release certain inflammatory chemicals that trigger this reaction.
Stress. More than half of people diagnosed with PMR say that they think their symptoms worsened, or flared up, because of stress.
How Can I Tell if My PMR Is Getting Worse?
You’ll notice that old symptoms reappear, or that you have new ones. They come on quickly, over a period of weeks or even days. Some things to look for include:
- Achiness and stiffness in the morning in your shoulders, upper arms, hips, thighs, and back of your neck
- Swelling or stiffness in the joints of your hands, wrists, and knees
- Poor appetite
- Weight loss
- Low-grade fever
- Feeling tired and rundown, like you have the flu
If you notice any of the above symptoms that last for more than a couple of days, let your doctor know. It’s a type of blood vessel inflammation that damages arteries, especially ones in your neck, head, and scalp. It can be life-threatening. Symptoms to watch for are:
- Headache, often right over the temples
- Jaw pain, especially when you eat, due to lack of blood flow to your chewing muscles
- Vision loss. Up to 10% of people with GCA lose some or all of their vision.
If you notice any of the above symptoms, call your doctor right away. If left untreated, GCA can lead to permanent vision loss, stroke, brain aneurysm, and even death.
What Should I Do if My PMR Gets Worse?
See your doctor. They can go over treatment options with you, which may include:
Glucocorticoids. Your doctor may want you to do another round of a glucocorticoid such as prednisone. While patients usually start at around 15 milligrams a day, your doctor may want to increase your dose to 20 or 25 milligrams if you have severe symptoms, or if your symptoms don’t start to get better after about a week. Once your symptoms have cleared up – which can take months to years – your doctor will begin to taper off your glucocorticoids. They will decrease your dose slowly, every couple of weeks. This will prevent symptoms such as stiffness or pain from returning.
About half the time, patients can go completely off of glucocorticoids after a year or two. Other times, it takes longer. Some patients stay on a maintenance dose of 5 milligrams for years.
Methotrexate. If your symptoms did not get better on glucocorticoids alone, or they cleared up but returned, your doctor may want to put you back on glucocorticoids along with methotrexate. This drug slows down your immune system. It’s been shown to help reduce the number of flare-ups.
Sarilumab (Kevzara). This drug is approved by the FDA for people with PMR who don’t respond to glucocorticoids. It works by blocking the actions of interleukin 6, which is a type of inflammatory protein that contributes to PMR symptoms.
Experimental Therapies for PMR
There are certain drugs that are being studied to treat PMR. They include:
Tocilizumab. Like sarilumab, it blocks the actions of interleukin 6. One small study found that 63% of patients who used it went into remission, compared to 12% of patients who used a placebo.
Rituximab. This is a type of drug known as a monoclonal antibody. It’s thought to bind to B cells, which may play a role in PMR. One study found that patients with PMR who got one infusion of rituximab as they tapered off of glucocorticoids were more likely to achieve remission than those who didn’t.
Tofacitinib. It’s a type of drug known as a JAK inhibitor. One study found that patients who received treatment with tofacitinib responded as well as those who were given prednisone.
If you haven’t responded to any of the FDA-approved therapies, or you’ve recently relapsed, you may want to ask your doctor if there are any clinical trials that may be right for you. Keep in mind that most people with PMR will respond to treatment. It may just take some time and effort with different therapies to get there.
Show Sources
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SOURCES:
UpToDate: “Treatment of Polymyalgia Rheumatica,” “Polymyalgia Rheumatica and Giant Cell Arteritis.”
Reumatologia: “Relapse of Polymyalgia Rheumatica After a Fall.”
La Presse Médicale: “Effect of stressful life events on clinical development of temporal arteritis and/or polymyalgia rheumatica.”
Annals of the Rheumatic Diseases: “A seasonal pattern in the onset of polymyalgia rheumatica.”
Cureus: “Rare Cases of Polymyalgia Rheumatica After Receiving COVID-19 Vaccinations.”
Best Practice Advocacy Centre New Zealand (BPAC NZ): “Polymyalgia Rheumatica (PMR) – Look Before You Leap,” “Giant cell arteritis: Always keep it in your head.”
Vasculitis Foundation: “Polymyalgia Rheumatica.”
Medscape: “Polymyalgia Rheumatica (PMR).”
Arthritis and Rheumatism: “Epidemiology of Giant Cell Arteritis and Polymyalgia Rheumatica.”
British Medical Journal: “Patients’ Views on the Causes of their Polymyalgia Rheumatica: A Content Analysis of Data from the PMR Cohort Study.”
FDA: “Highlights of Prescribing Information: Kevzara.”
