PMR - Steroid toxicity

If you or someone you love is living with polymyalgia rheumatica (PMR), your doctor may have prescribed oral corticosteroids (a class of steroids) like prednisone. While these drugs have been found to dramatically reduce the inflammation associated with PMR, an inflammatory disorder that causes stiffness and pain, especially in the shoulders and hips, along with other symptoms like limited range of motion, mild fever, and fatigue, they do come with side effects.

“Steroid therapy is the first-line treatment for PMR, based on current guidelines,” says Brett Smith, DO, a rheumatologist at Tennessee Direct Rheumatology and East Tennessee Children’s Hospital. “Typically, moderate doses of steroids — 15 to 20 milligrams per day — will quickly alleviate the initial symptoms of PMR.”

While steroids quickly alleviate the symptoms of PMR, a number of individuals can experience adverse effects either initially or over the treatment course, which can be 12 to 15 months on average.

Examples of adverse effects of steroids treatment include:

  • Adrenal insufficiency
  • Bone loss with subsequent risk of fracture
  • High blood pressure
  • High blood sugar
  • Insomnia
  • Skin fragility
  • Weight gain

Being aware of certain outcomes from using steroids can help you best manage your health throughout the course of your treatment. Here’s what to keep in mind about steroid treatment and how to advocate for yourself in the doctor’s office.

Preventing Toxicity in PMR Steroid Treatment

While corticosteroids can be very helpful in managing your disease, taking too much can lead to toxicity. Most corticosteroid overdoses occur with pills and liquids and can cause several symptoms, ranging from depression to nausea and dry skin, per the Cleveland Clinic.

“The initial dose used is variable,” says Anisha Dua, MD, MPH, Associate Professor of Rheumatology at Northwestern University. “I usually use about 15 milligrams per day in most patients, but depending on risk factors and comorbidities, we may opt for a higher range or lower range. Once we see a clinical response, the plan is alway to try to taper the glucocorticoids.” Tapering a drug refers to the gradual reduction of dosage or frequency of administration over a period of time,

Your doctor should be consistently reassessing your clinical symptoms and lab tests — and looking for opportunities to wean off the medication. It’s important to have an open conversation with your doctor about how your initial steroid dosage is determined and how it’ll be monitored.

Having regular health check-ups with your doctor may help them lower the dose more quickly. If you can, schedule regular appointments right away with the doctor’s office so you don’t have to wait for availability.

“I encourage people to see their doctor more regularly so they can go through the questions of side effects, whether or not the drug and its dose are appropriate, and when to step down in dosing,” says Aly Cohen, MD, a rheumatologist at Integrative Rheumatology Associates in Princeton, NJ.

Keep a log of any adverse effects you experience so you and your doctor can make the most informed decision on dosing adjustment.

Protecting Your Bone Health

Corticosteroids speed up the natural breakdown of bone in your body — and also reduce how much calcium your body absorbs, which is a double hit for your bone health. The longer you take these drugs and the higher the dose, the greater your risk will be for osteoporosis, per Cedars-Sinai.

For patients taking steroids for PMR, getting enough calcium and vitamin D is crucial.

“Calcium and vitamin D supplementation is definitely something I recommend in my patients,” says Dr. Dua. “I usually check vitamin D levels at baseline and make sure they’re in the normal range. If they’re significantly below the normal range, I’ll do a high dose of vitamin D to try to get them to baseline — and then continue regular calcium and vitamin D supplementation.”

Calcium keeps your bones dense and strong, while vitamin D helps your body absorb it, per the National Library of Medicine.

Your doctor will also consider if you have any baseline issues with bone density (for instance, if you already have an osteoporosis or osteopenia diagnosis, or if you’ve had compression fractures).

“Those patients, depending on their status, may or may not need treatment or maintenance with different bisphosphonates or other medications that are used to manage osteoporosis,” says Dr. Dua. “They might need more regular screening and more escalation of their therapies.”

Bisphosphonates are a class of prescription drugs that help reduce bone breakdown and preserve bone mass.

Weight-bearing exercises can also help you build strong bones and slow down bone loss, particularly in your legs, hips, and lower spine. “Light weight-bearing exercise is known to help in patients with osteoporosis or osteopenia with preserving their bone health,” says Dr. Dua. “Make sure you’re staying active, even though you may be in pain when you have PMR.”

Dr. Dua recommends gentle exercises like yoga with light weights — think five pounds or less.

Managing Comorbidities in PMR

Polymyalgia rheumatica is associated with several comorbidities, including heart, respiratory, kidney, and autoimmune disease, per a study in the journal Seminars in Arthritis and Rheumatism

“Patients with PMR have a high comorbidity burden, both before and after diagnosis,” note the researchers in the study. “Clinicians should be aware of the high prevalence of comorbid conditions in this group and the impact that treatment with glucocorticoids may have on comorbidity.”

Coordinated care between specialists will help ensure your symptoms and medication are being managed properly. For instance, prednisone can raise blood pressure, so it’s key that your cardiologist is aware that you’re taking the medication.

“Comorbidities are managed on a case-by-case basis,” says Dr. Smith. “Frequent follow-ups to assess blood pressure, blood sugar, and weight can ensure lifestyle management is discussed with proper nutrition, routine exercise, and medications, if needed.”

Another example: As mentioned previously, your doctor may run a baseline bone density test (DEXA scan) followed by vitamin D3 supplementation, a resistance training plan, and low-dose bisphosphonate if your bone health is a concern.

Close management between your specialist and your primary care physician (and other doctors) is important for managing comorbidities. That said, this interaction between your physicians may be something you need to advocate for as a patient if it doesn’t occur on its own.

“There should be interaction between physicians, but it’s not a common real-world occurrence,” says Dr. Cohen. “The more doctors that see someone, the greater the likelihood that they’re going to get diagnosed properly.”

Patient-Centric Strategies for a Healthier PMR Journey

Self-advocacy isn’t just for coordinating care between specialists. Asking questions and expressing concerns every step of your PMR journey will help you get the best outcomes for your health.

A few questions Dr. Smith recommends asking your provider before you start steroids include:

  • How long can I expect to be on steroids?
  • Does it matter which type of steroid I use?
  • Is there any way to prevent steroid side effects?
  • Are there other options aside from steroids?
  • What if steroids don’t work down the road for my PMR?

You can also make lifestyle modifications on your own to enhance your overall well-being while you’re being treated for PMR. “Lifestyle is so critical to the normal workings of the immune system — and having a healthy lifestyle certainly helps with any inflammatory condition risk,” says Dr. Cohen.

For instance, eating healthy can help you manage the inflammation that occurs with conditions like PMR. “The Mediterranean Diet is generally helpful with inflammation and healthy foods that are high in omega-three fatty acids are good for general health,” says Dr. Dua. “This is especially true if you have this condition and are taking medications like prednisone that could lead to weight gain and increased appetite.”

Of course, talk to your provider and make sure that any given eating plan is the best fit for you, based on your comorbidities and other lifestyle factors. In addition to eating healthy and engaging in weight-bearing exercise, consider how you’ll protect your mental and emotional wellness during this time.

“Making sure your disease is controlled can be a long and frustrating process,” says Dr. Dua. “Having other people who understand what you’re going through, whether they have the diagnosis or simply an understanding of it, can be good for your mental health.”

A solid support system can help you feel less alone throughout your treatment and make the bad days a bit more bearable — and the good days even better. Look for PMR support groups in your community or online, or join the community to chat with others coping with related conditions.

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This article was made possible with support from Sanofi.

Calcium, vitamin D, and your bones. U.S. National Library of Medicine. April 19, 2022.  

Corticosteroids overdose. Mount Sinai. Accessed January 15, 2024. 

Corticosteroid-Induced Osteoporosis. Cedars-Sinai. Accessed January 15, 2024. 

Interview with Anisha Dua, MD, MPH, associate professor of rheumatology at Northwestern University. 

Interview with Aly Cohen, MD, a rheumatologist at Integrative Rheumatology Associates in Princeton, New Jersey. 

Interview with Brett Smith, DO, a rheumatologist at Tennessee Direct Rheumatology and East Tennessee Children’s Hospital. 

Partington R, et al. Comorbidities in patients with polymyalgia rheumatica prior to and following diagnosis: A case control and cohort study. Seminars in Arthritis and Rheumatism. June 5, 2020. doi:   

Polymyalgia rheumatica. Mayo Clinic. June 16, 2022. 

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