I Don't Want to Take Prednisone for PMR: Are Corticosteroids Necessary?
My mother was diagnosed with PMR three years ago, and since then, I've watched her struggle with prednisone ever since. As a result of taking corticosteroids she got cataracts, agonized about gained weight, gritted her teeth through steroid-induced anger ("roid rage"), and still struggled with pain. To me, it seems like the side effects of the "treatment" are as bad as the disease itself.
So when I was diagnosed with PMR three years later, I thought twice before taking the prednisone my doctor prescribed for me. Watching what it had done to her convinced me not to jump on the corticosteroid bandwagon and to look for other ways to deal with the pain.
Because, despite their effectiveness in reducing inflammation and pain, corticosteroids can cause disproportionate damage in PMR-sufferers: The use of prednisone increases the risk of mortality1, and up to 81% of patients develop adverse affects to prednisone within the first year2. There is a dependence on corticosteroid therapy, despite an increased tendency for negative long-term effects. Doctors should try to prescribe the minimum possible dose to control symptoms, but getting the right dosage is a constant battle.
For most, facing the pain of PMR without the help of prednisone is simply impossible. But those who are at greater risk of prednisone's side effects, those dealing with lower levels of pain, or those who have high pain thresholds might want to try to avoid corticosteroids or delay their use for as long as possible. Here's why.
Important Questions to Ask Your Doctor Before You Start Taking Prednisone
- What are the short term and long term side effects of using prednisone, and are any of them particularly threatening to your individual health? (You'll find a list of side effects below, with information about what is considered a "large" dose.)
- Is it safe to avoid or delay prednisone, and what are the risks of doing so? (Below, you'll find a list of people who should avoid it.)
- Have you been tested to determine if you have GCA? (Below, you'll find out why this is so important to do asap.)
- What would likely happen if you chose not to use prednisone? (Below, you'll find some of the mental and physical expectations.)
- Does your doctor have any patients who have chosen not to take prednisone or who delayed starting?
- Besides prednisone, what other treatments, diets, exercises, or therapies does your doctor recommend? (And a list of alternative ways to treat pain and inflammation.)
Use this list to generate a discussion with your doctor. Below, you'll find the answers I got from my doctors for each of these questions.
Up to 81% of patients develop adverse affects to prednisone within the first year.
Side Effects of Using Prednisone
Using prednisone, especially in high doses for long periods of time, can become problematic, as there are so many side effects. Since PMR treatment usually starts with a high or medium dose of prednisone and lasts for 1 to 5 years, the use of the corticosteroid can become problematic. See the table below for a partial list of short- and long-term side effects.
If you want to know more about prednisone and how to dose properly, read Healthline's useful prednisone summary.
Short and Long-Term Side Effects High Doses of Prednisone
Common Side Effects
Drastic Side Effects (Worsen Over Time)
high blood pressure
eye issues: blurred vision, glaucoma, cataracts
retention of salt and fluid; swelling, edema
high blood sugar or diabetes (incites diagnosis and worsens symptoms)
puffy face ("moon face"), rounding of the upper spine ("buffalo hump"), and redistribution of body fat
mood swings, personality changes, and depression
muscle atrophy and/or loss
skin changes: bruising, thinning, acne, delayed wound healing
impaired wound healing
aggression; agitation; psychosis
restlessness and sleep issues; insomnia
osteoporosis; thinning and breaking bones
necrosis of hips and other joints
growth of facial hair; suppressed adrenal gland hormone production (seen in severe fatigue, loss of appetite, nausea, and muscle weakness)
liver and kidney damage
noisy, rattly breathing
memory problems, confusion, delirium
What Is Considered a High Dose of Prednisone?
Firstly, proper dosage depends on your weight. However, in general, a low dose is smaller than or equal to 7.5 mg of prednisone per day according to BMJ's Journals Annals of the Rheumatic Diseases. A medium dose would be from 7.5 mg to 30 mg per day, and a high dose would be from 30 to 100 mg.
Who Should Avoid Prednisone, If Possible?
- People with infections: Prednisone weakens your immune system, can delay or prevent healing, and increases the risk of getting a new infection.
- People with diabetes: Because it increases your blood sugar level.
- People with kidney or heart disease Prednisone can raise your blood pressure and cause you to retain salt and water.
- Pregnant or breastfeeding women.
- Anyone with osteoporosis.
- If you're having surgery (including dental surgery), since prednisone can complicate healing.
- Seniors. Because it puts stress on the liver and kidneys.
- Children. Because it stunts growth.
- Anyone with heart or kidney disease.
- Anyone taking a drug that might have a negative interaction. (Check this article for a full list of medications.)
- People who are allergic to prednisone.
- Anyone who doesn't want to risk side effects.
What Would Happen If I Did NOT Use Prednisone to Treat PMR?
Physical effects of untreated PMR:
- Pain! If you don't take prednisone, you will have more pain.
- Muscle stiffness and atrophy. Inflammation causes stiffness and can lead to temporary loss of joint function. The less you move your muscles, the weaker they get.
- Fatigue and insomnia. Because of muscle pain and stiffness, you may feel extra tired, but it's harder to get a good night's sleep. You may also have night sweats.
- Gastrointestinal issues like constipation, diarrhea, or acid reflux.
- Weight gain.
- Hair thinning, skin bruising.
Emotional/psychological effects of untreated PMR:
Pain and depression feed each other. According to the Arthritis Foundation, those who are depressed are about three times more likely to develop chronic pain, and those who experience chronic pain are about three times more likely to be clinically depressed. Studies of osteoarthritis, rheumatoid arthritis, lupus, and fibromyalgia show that those who feel more negative emotions also report more pain. Pain—especially unmitigated—can wear you down and affect your emotional stability.
Would PMR last longer if left untreated?
The length of the disease is not affected by the use of corticosteroids. PMR usually lasts the same whether you use prednisone or not: from 1 to 5 years.
Side Effects of Untreated (Drug-Free) PMR
Side Effects of PMR (without steroids)
Could you experience this side effect WITH prednisone?
yes, but to a lesser extent
muscle loss and atrophy
yes, but to a lesser extent
yes, but to a lesser extent
yes, but to a lesser extent
yes (perhaps more)
yes (perhaps more)
yes (perhaps more)
yes (perhaps more)
depression or anxiety
One Dangerous Risk of Not Taking Prednisone: The Connection Between PMR and GCA
Approximately 15% of patients with PMR also develop giant cell arteritis (GCA), which is a condition that requires prompt treatment with corticosteroids to prevent permanent vision loss. It is extremely important that your doctor test for GCA and that you take prednisone if diagnosed.
Does Prednisone Prevent Giant Cell Arteritis?
Some PMR-sufferers believe that they must take prednisone to avoid GCA, but there is no evidence to support this idea. GCA-sufferers are usually prescribed prednisone, but there is no evidence to support the suggestion that prednisone might affect a person's likelihood of developing GCA. So taking prednisone will not prevent you from developing GCA.3
Pain vs. Disabling Pain
If you are considering avoiding or postponing prednisone, you'll probably want to consider your reaction to pain. Your "pain threshold" is the point at which you begin to feel pain, and your "pain tolerance" is the maximum amount of pain you are able to tolerate. If your pain threshold and tolerance are high, you might have more success in navigating PMR without prednisone.
Some people can endure more pain than others. Pain is completely subjective. How much pain is too much? Only you can answer that question.
I have a fairly high tolerance to pain. I had my children without epidurals, I do my work even when I'm ill, and before now, I'd never finished a bottle of Ibuprofen before it expired (that is, before I got PMR). So far I have managed to continue doing many things (work, manage my home, do light exercise) even though I am not taking steroids but still, my life has been completely changed by PMR and some days are really hard. I sometimes think I might want to try the prednisone, but then I remind myself about the difficulty people have getting off of it and I think again.
Are There Alternative Cures or Treatments for PMR?
Although some say corticosteroids (like prednisone) are "cures," although they do mask the pain, they do nothing to identify or treat the underlying cause or condition. However, there is some evidence that the following can help manage the disease:
Diet: Some believe that changes in diet can "cure"—or at least alleviate—PMR.
- My rheumatologist recommended an elimination diet to identify foods that I might be allergic or sensitive to.
- She also recommended a Mediterranean diet (a 2018 study found that participants following this diet had lower markers of inflammation).
- The Anti-Inflammatory, Mediterranean, Keto, and Paleo diets are all anecdotally helpful.
- Controlling sugar and carbs may help.
Exercise: Many say that they can control pain with exercise: although it feels counter-intuitive (and even injurious!) to move when moving hurts so much, many report that they are able to ward off or lessen their pain through gentle movement and exercise. I try to exercise every day, and I try to move my body every 20 minutes or so (instead of working nonstop as I used to).
Anti-Inflammatories: Many claim that NSAIDS, allergy-avoidance, curcumin, and ginger can help. I use all these.
CBD and THC: Many PMR-sufferers report relief using cannabis-based products to ease pain. and CBD as anti-inflammatory 4. I use both in tincture form. Note: The USFDA has not approved the medicinal use of cannabis products for PMR.
Will Diet and Exercise Help With PMR Symptoms?
Can PMR be controlled by diet and exercise? That depends on many factors, including your levels of inflammation, your tolerance to pain, your age, and how healthy you are.
Exercise is extremely important for PMR. Regular exercise is essential to maintain joint flexibility, retain muscle strength and function, and control pain.
I have found that I can no longer sit for long periods of time and must get up, stretch, and move every 20 minutes or so to keep my joints from seizing. Even though I don't want to move, I make myself go on long walks.
What else might help with PMR symptoms?
- Supplements. Certain supplements may help to lessen inflammation. Omega-3s may all help to reduce inflammation. Several spices may also help with chronic inflammation, including turmeric, ginger, garlic, and cayenne.
- Nonsteroidal anti-inflammatory drugs (NSAIDs). Over-the-counter NSAIDs like aspirin, ibuprofen (Advil), and naproxen (Aleve), can help reduce inflammation and pain, but long-term use can be dangerous. My doctor said I could take 3 Aleves (220 mg each) per day and after a year, we'd discuss alternatives.
- Anti-Inflammatories: many claim that NSAIDS, allergy-avoidance, curcumin, ginger, omega-3 fatty acids (fish oil), and an anti-inflammatory diet can help. For research and studies about spices, read Chronic diseases, inflammation, and spices: how are they linked?
Can PMR be controlled by diet and exercise only?
That still depends on your levels of inflammation, tolerance to pain, age, how healthy you are, and other variables. Many people claim to have treated PMR with diet and exercise alone, although there have been no studies. But even if you don't control it completely, diet and exercise will certainly help.
I am trying to handle PMR without prednisone.
My PMR symptoms hit me suddenly on July 4, 2019, during a long, painful, and somewhat traumatic plane ride, after which I vomited and could not sleep. Since my mom had been diagnosed three years earlier, I'd watched her suffer with prednisone, so I decided to try other methods. So far, I am still managing the pain without the meds... although if it gets any worse or if I develop any more symptoms, I may succumb to the prednisone.
By "manage the pain," I don't mean that I don't have it, but that the pain has not prevented me from living and enjoying my life. I keep checking in with and comparing notes with my mom, who did take the prednisone but also still feels pain.
More Answers About PMR
Too-quick misdiagnoses of PMR cause more problems than underdiagnoses, and misdiagnosis can be extremely detrimental, which means it's smart for doctors and patients to explore every possible issue before settling on a PMR diagnosis. If you're in the diagnosis process or are unsure about your diagnosis, you might want to read Difficult Questions About the Polymyalgia Rheumatica (PMR) Diagnosis.
For those who have just gotten—or are just about to get—a PMR diagnosis, you may be wondering if there is a cure. Is the pain ever going to end? Here's the long answer to your question: Is There a Cure for Polymyalgia Rheumatica (PMR)?
What Is Inflammation, Anyway?
PMR is an inflammatory disorder. What does that mean? Inflammation is how your body fights back. Whenever something attacks (an infection or toxin, for example, or if you get injured), your body sends white blood cells to fight it. Your immune system triggers the release of antibodies and proteins, and increases the blood flow to the affected area. Usually, if everything is working normally, your body will only be inflamed for a few hours or days.
However, with chronic inflammation (like PMR), the response lingers for weeks, months, or years, putting your system in a constant state of alert.
What Are the Risks of Chronic, Acute Inflammation?
When you have chronic inflammation (as with PMR), your body’s immune response can eventually have a negative impact on your tissues and organs. Your body mistakenly attempts to heal your joints, even though they are not at risk, and the heightened inflammation can eventually effect internal organs or other healthy tissues and cells instead. Over time, this can lead to DNA damage, tissue death, and scarring. Research suggests that chronic inflammation could contribute to a range of conditions, including
- cardiovascular disease
- rheumatoid arthritis
- type 2 diabetes
- neurodegenerative diseases like Alzheimer’s
Do You Have PMR?
If so, will you please share your experience with prednisone?
1 US National Library of Medicine National Institutes of Health: Prednisone use and risk of mortality in patients with rheumatoid arthritis: Moderation by use of disease-modifying anti-rheumatic drugs by Mary Chester Wasko, et al. May, 2016.
2 Clinical outcomes, quality of life, and diagnostic uncertainty in the first year of polymyalgia rheumatica by Andrew Hutchings et. al. May, 2007.
3 Prescribing for polymyalgia rheumatica by David F Liew, Claire E Owen, and Russell R Buchanan, Feb 2018.
4 How Seniors Joined the Cannabis Craze by Sara Davidson, in The New Yorker April 20, 2018.
Other relevant articles and studies:
Duration of Steroid Treatment in Polymyalgia Rheumatica by E Tang, et. al.: links to a study that examined how patients without raised inflammatory markers might need a shorter duration of steroid treatment.
The correct prednisone starting dose in polymyalgia rheumatica is related to body weight but not to disease severity: Links to study examining correct dosage of corticosteroids and how it depends on your size and body weight rather than the severity of your symptoms.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.