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Tag: chronic fatigue syndrome

A detailed guide to Chronic Fatigue Syndrome (CFS), including its symptoms, causes, and effective treatment strategies to improve energy and well-being.

If Rheumatoid Arthritis Inflammation Is Improving, Be Patient: Less Pain and Fatigue May Be Coming

Knowing there could be a lag between objective measures of improvement and patient–reported outcomes could help prevent over-treatment.

When a rheumatologist measures disease activity in a patient with rheumatoid arthritis (RA), objective clinical measures like C-reactive protein levels in the blood and swollen joint count are essential to factor in, but so are patient-reported measures including pain and fatigue. While both are certainly important, there may be some benefit to evaluating clinical factors and patient-reported measures independently rather than combining both into a composite disease activity score.

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(You can use our ArthritisPower app to track your symptoms and disease activity and share your results with your doctor.)

According to a new study, presented at the 2019 American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting in Atlanta, there may be some lag time between when objective tests show that patients are getting better and when patients actually start to feel better.

The researchers, led by Janet Pope, MD, MPH, at Western University in Ontario, analyzed data on 986 patients. They found that the time it took for to reach remission or low disease activity varied widely depending on whether or not patient-reported factors were used as the goalpost.

When the Clinical Disease Activity Index (CDAI), which relies on solely clinical measures, was used, it took patients an average of 12.4 months to reach low disease activity. Yet it took the same group of patients getting the same exact treatment nearly 19 months to reach low disease activity when it was defined by patient global assessment of disease activity (PtGA).

Knowing that this lag time of several months exists is important, because it suggests that health care providers shouldn’t necessarily rush to change up a patient’s treatment regimen if clinical scores are good; waiting it out a few months to see if pain and inflammation improve might be a better option.

“Careful interpretation of [patient-reported outcomes] and composite scores could impact management, including prevention of overtreatment and unnecessary switching of DMARDs,” the authors concluded.

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03/31/2021
Good News for Pregnant Women with Arthritis: Most Babies Exposed to Biologics in Utero Don’t Get Serious Infections

Although biologics cross the placenta, research shows they lead to few infections in babies after they’re born.

The prospect of pregnancy can be daunting for women with inflammatory arthritis. Not only can disease flares occur, but a host of medications — including the commonly prescribed methotrexate — are off-limits because of concerns about birth defects and complications. There’s also a worrisome information gap on the effects of many medications during pregnancy, since pregnant women are usually excluded from clinical trials.

One type of medication, tumor necrosis factor inhibitors (TNF inhibitors), is increasingly used during pregnancy after animal studies did not show a risk to the developing fetus. But that left open the question of whether the drugs, as they suppress the immune system in expectant moms in order to manage their disease, might also lessen immune response in their newborns, leaving babies more vulnerable to infection after they’re born.

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Last year, researchers at McGill University in Canada used a large health database in the United States to address that question for women with rheumatoid arthritis (RA). They found that that there was no excess risk for babies exposed to anti-TNF biologics compared to offspring of women with RA who didn’t take these drugs and to women without RA.

This year, the group is back with a similar analysis of serious infections in babies exposed to non-TNFi biologics, such as abatacept (Orencia), rituximab (Rituxan), tocilizumab (Actemra), ustekinumab (Stelara), and vedolizumab (ENTYVIO). Like TNFis, non-TNFi biologics can cross the placenta, leading to medication exposure than can equal or surpass that of the expectant woman. They also evaluated tofacitinib (Xeljanz), a small-molecule drug that may also cross the placenta (although that has not been confirmed).

The new study was presented at the 2019 American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting in Atlanta.

“Our project innovates by using the largest cohort of pregnant women with chronic inflammatory diseases ever assembled to address drug safety in pregnant women, who are regularly excluded from clinical trials,” lead author Evelyne Vinet, MD, PhD, told the American College of Rheumatology in a press release.

The investigators tallied infections that occurred in 16,490 babies before their first birthdays that were serious enough to require hospitalization. All of their mothers had been diagnosed with an inflammatory disease, such as rheumatoid arthritis, ankylosing spondylitis, psoriasis, psoriatic arthritis, or inflammatory bowel disease. During pregnancy, 105 of the mothers took tofacitinib or non-TNFi biologics and 1,611 took TNFis. Infections in those children were compared to those in 164,553 babies born to unaffected mothers matched for age, year of delivery, and state of residence.

The researchers found just two cases of serious infections in exposed children, one whose mother received tofacitinib and one whose mother received abatacept. Overall, the proportion of serious infections in offspring of mothers with inflammatory disease was: 1.9% in those exposed to tofacitinib or non-TNFi biologics; 2.3% in those exposed to TNFis; and 2.1% of those exposed to neither type of drug. In comparison, the percent of serious infections in children born to unaffected mothers was 1.6%.

“Our data will help guide counseling and management of pregnant women with inflammatory arthritis that require non-TNFi biologics and tofacitinib during pregnancy,” says Dr. Vinet. Still, she considers this analysis to be just the first step in understanding the effect of these drugs during pregnancy.

“We need more data to confirm safety, particularly regarding other pregnancy outcomes. It is imperative that we further study this issue to provide firm evidence to guide treatment decisions prior to conception and throughout pregnancy,” she says.

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03/31/2021
Here’s More Data That Suggests We Shouldn’t Use Opioids to Treat Osteoarthritis Pain

Surprisingly, stronger opioids were the worst at relieving pain in a new multi-study analysis.

Despite concerns about safety and addiction, lots of people with osteoarthritis (OA) take opioids to address their chronic pain. A recent study in Sweden, for example, revealed that one in four patients with OA had been prescribed an opioid in the previous year — despite the fact that the drugs aren’t on the list of recommended treatments except in extreme circumstances or after surgery.

Opioid medications work by attaching to opioid receptors in the brain and spinal cord and reducing the pain messages that are sent to the brain.

With lots of people with many different kinds of chronic pain, including various forms of arthritis, taking the powerful drugs, researchers at Tufts Medical Center in Boston stepped back to ask whether opioids actually work to relieve pain and improve life for people with OA.

Their results, based on an analysis of 11,402 participants across 23 randomized controlled trials, were presented at the 2019 American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting in Atlanta.

In all of the studies included in the analysis, opioids were compared against a placebo. Here’s what the authors found:

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Did opioids relieve pain and improve function? In assessments at two, four, eight, and 12 weeks, there were small but statistically significant improvements.

Did opioids help with depression or improve quality of life? Not at all.

Did people taking opioids sleep better? Yes.

Were stronger opioids more effective than weaker opioids? Surprisingly, stronger opioids demonstrated consistently worse pain relief, the researchers reported.

“’Strong opioids’ underperformance was the study’s most interesting finding, and likely due to the relationship between pain relief and tolerability of opioids based on dose,” study lead author Raveendhara R. Bannuru, MD, PhD, told the American College of Rheumatology in a press release.

In the studies, twice as many people taking strong opioids (such as morphine, oxycodone, fentanyl, and high doses of tramadol) dropped out because of side effects than those who took weak opioids (such as codeine, dihydrocodeine, and lower doses of tramadol).

“In light of this evidence, clinicians and policymakers should reconsider the utility of strong opioids in the management of OA,” says Dr. Bannuru.

The less-than-impressive results are consistent with the latest guidelines from the Osteoarthritis Research Society International (OSRI), which strongly recommends against using opioids in OA involving the knees, hips, or multiple joints.

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03/31/2021
22% of U.S. Patients with Arthritis Have ‘High-Impact’ Chronic Pain — Here’s What That Means

New data from the Centers for Disease Control and Prevention (CDC) suggests that arthritis might be a leading cause of chronic pain in the U.S.

Chronic pain can occur for many reasons: migraines, reproductive-related health issues (such as endometriosis or fibroids), advanced cancer, an injury, and so on. But if you had to place a bet on the root cause for the most chronic pain patients, arthritis would be a pretty good guess.

That’s the key takeaway from a new study, presented at the 2019 American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting in Atlanta, which aimed to compare the prevalence of chronic pain among arthritis patients to the U.S. population at large.

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To conduct the study, researchers from the U.S. Centers for Disease Control and Prevention (CDC) analyzed data on nearly 60,000 respondents to the 2016-2017 U.S. National Health Interview survey. They determined that 48 percent of those with arthritis lived with chronic pain, which was substantially higher compared to those without arthritis.

They also found that 22% of adults with arthritis had what was called “high impact chronic pain,” which is defined as pain that has lasted at least three months and is severe enough to interfere with a major life activities (like being unable to leave the house for work).

“Despite unknown temporality, our study results combined with clinical evidence suggests that arthritis may be a leading cause of [chronic pain] and [high impact chronic pain] among U.S. adults,” the authors concluded.

The authors called for “integrated approaches to pain management that include evidence-based non-pharmacologic strategies” — including cognitive behavioral therapy, physical activity, and self-management education) — to “reduce chronic pain and its adverse effects, such as psychological distress, and may help reduce prescribed opioid use.”

For more information on science-based treatment for chronic pain, sign up for an upcoming webinar from the Global Healthy Living Foundation.

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03/31/2021
This Is Important for RA Patients to Know: Taming Inflammation Doesn’t Always Alleviate Pain

“This may have implications for management decisions beyond treating to disease activity targets alone.”

Pain and inflammation often go hand in hand, especially for people with inflammatory conditions like rheumatoid arthritis (RA). So it logically follows that when inflammatory markers decrease, less pain would follow. But according to a new study that isn’t always the case.

The study, which was presented at the 2019 2019 American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting in Atlanta, used data from three earlier trials. The authors, led by Mart A.F.J. van de Laar, MD, PhD, from Arthritis Center Twente in the Netherlands, aimed to separate patient reports of pain from objective measures of inflammation (including swollen joint counts and C-reactive protein).

In each of the three trials, a sizeable portion of RA patients being treated with baricitinib (Olumiant) achieved inflammation control by week 24, yet not everyone who had less inflammation reported corresponding improvements in pain. Not surprisingly, patients who said they had less pain in addition to low inflammation as indicated by swollen joint count and C-reactive protein level were more likely to report better physical functioning, less fatigue, and overall better quality of life compared to those whose inflammation (but not pain) was brought under control.

“Despite apparently well-controlled inflammation [swollen joint count ≤1 and CRP ≤1 mg/dL], residual pain may persist,” the authors concluded. “This may have implications for management decisions beyond treating to disease activity targets alone.”

Baricitinib is a JAK inhibitor, an oral medication that is not a first-line treatment for RA. Whether a similar number of patients taking difference types of RA medications, such as TNF inhibitors, experience improvements in inflammation but not pain is unclear as it was not part of this research.

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03/31/2021
Nearly 20% of People with Spondyloarthritis Also Have Fibromyalgia, New Data Show

Female patients were much more likely to have a dual diagnosis.

Small studies have suggested an overlap between spondyloarthritis (SpA) and fibromyalgia, but now a larger meta-analysis confirms it: About 17 percent of SpA patients also have fibromyalgia, compared to 2 to 8 percent of the general population that has fibromyalgia.

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These findings, which were based on an analysis of 15 earlier observational trials, were presented at the 2019 American College of Rheumatology/Association of Rheumatology Professionals (ACR/ARP) Annual Meeting in Atlanta.

The researchers determined that females with SpA were significantly more likely than men to have the dual diagnosis of fibromyalgia. They also found that people who live with both conditions are more apt to have higher levels of SpA disease activity. Whether that’s a coincidence or related to the underlying pathology of these conditions is unclear.

SpA is an umbrella term for a few types of inflammatory arthritis. Axial spondyloarthritis is the most common kind of SpA. It includes two general subgroups: ankylosing spondylitis, which is when there is damage to the spine or sacroiliac joints that is visible on X-rays, and non-radiographic axial spondyloarthritis, which is when there is inflammation but no damage you can see on X-rays. Peripheral spondyloarthritis, reactive arthritis, psoriatic arthritis, and enteropathic arthritis (associated with inflammatory bowel disease) are also types of SpA.

People with SpA often need to take disease-modifying antirheumatic drugs (DMARDs) and/or biologic drugs to slow or stop the progression of the disease.

According to the American College of Rheumatology, fibromyalgia is not a form of arthritis but rather a neurological condition that causes widespread pain and fatigue. Fibromyalgia is often treated with over-the-counter pain relievers as well as certain antidepressants and anti-seizure drugs that have been shown to reduce fibromyalgia symptoms.

In addition to occurring in patients at the same time, it’s also possible that spondyloarthritis can be mistaken for fibromyalgia and therefore not properly diagnosed.

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03/31/2021
30% of RA Patients Don’t See Fatigue Improve After Starting Treatment

And a few factors seemed to be responsible, including being obese and also having fibromyalgia.

When most people think about rheumatoid arthritis (RA), they focus on joint pain, swelling, and stiffness. While those issues are certainly common, they tend to co-exist with another symptom — overwhelming fatigue — that can be harder for friends and family to understand.

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Fatigue is more than being a little tired. Earlier this year, a Chronicwoman/Chronicillness poll found that 89 percent of people with arthritis (including but not limited to RA) said that fatigue interfered with their ability to go about their everyday activities. An important question for treating RA, then, is this: Does severe fatigue resolve when patients receive proper RA treatment?

Fortunately, a new study says yes: 70 percent of newly diagnosed patients who initially presented with high levels of fatigue “reported significant improvements in fatigue” within a year.

These findings, which were presented at the 2019 American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting in Atlanta, focused on more than 1,000 Canadian patients who had been recently diagnosed with RA and started on a disease-modifying antirheumatic drug (DMARD), such as methotrexate or sulfasalazine. They suggest that treating RA with these drugs also leads to less fatigue, though whether the medication is directly responsible is unclear. It’s equally likely that patients become more energized as a result of their joint pain and stiffness improving.

Although this is mostly good news, the researchers, led by Susan J. Barlett, PhD, from McGill University in Montreal, found that a substantial portion of participants — 30 percent — did not experience a major improvement in their level of fatigue. Those in this camp were typically more likely to be obese or have fibromyalgia in addition to RA. Some had simply reported less fatigue to begin with, so there was less room for improvement.

“Debilitating fatigue is common around the time of RA diagnosis and is associated with more active disease, worse pain and disability, and [osteoarthritis]/back pain, obesity, depression, poor sleep, and major stressors in the previous year,” the authors wrote. “Early [methotrexate] use and optimizing weight, sleep, and mood may help address persistent fatigue when RA inflammation is well controlled.”

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03/31/2021
The 5 Ways My Artwork Helps Me Cope with My Multiple Chronic Diseases

‘Art enables me to face my body and my life with courage.’

Chronic 24/7 pain, fatigue, swelling, and a host of other symptoms are all part of my journey with rheumatoid arthritis, axial spondyloarthritis, osteoarthritis, fibromyalgia, and other chronic conditions I’ve been living with for years. I’ve loved drawing since I was a child, and after my RA diagnosis in 2011, I started to create art more regularly. As my diseases progressed and multiplied, my art became more integral to expressing my experiences.

Over this past year, I’ve been fortunate to start sharing my artwork on a much bigger platform than my own social media pages. Chronicwoman started publishing my art regularly — and the supportive, empathetic, and eye-opening responses I’ve been receiving from the chronic illness community have gone beyond my wildest expectations. I gave a keynote address about how my arthritis impacts my art at the annual meeting of the National Organization of Rheumatology Managers (NORM) and presented my artwork at the Spring/Summer 2020 New York Fashion Week show of designer Michael Kuluva, who also lives with rheumatoid arthritis.

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I’m particularly proud of developing an abstract about how my artwork helps me cope with arthritis for the 2019 American College of Rheumatology/Association of Rheumatology Professionals (ACR/ARP) Annual Meeting in Atlanta. It’s part of the Patient Perspectives Poster Session, which invites patients like me to address “adaptations developed with their health care team that have improved their health.” I gave a lot of thought to the specific ways that creating artwork that visually conveys patients’ experiences of arthritis symptoms has helped me and others cope with our diseases.

Here’s what I realized — and shared in my ACR abstract:

1. Creating art that expresses my pain and health struggles helps me trust my body.

Art helps me to listen to my body, enabling a more flexible reaction to pain episodes or flares.
Listening to my body in the first place got me diagnosed and got me the medical help that I needed. My health and body took an upturn when I learned to not fight the cycles of flares, pain, and disease. Listening to my body for cues allowed me to function more because I rested or pushed when needed. I learned my patterns and strengths, allowing me to accomplish more when I have energy without overdoing it.

2. Visual art enables me to express my journey while reaching out to others.

I am an expressive person and found myself discussing my diseases a lot due to the need for accommodation or support. But symptoms like constant exhaustion, lack of sleep, high pain levels, RA flares, and bouts of back pain left me without the capacity to use words.

When I began to publish these pieces on social media, the overwhelming response reminded me that I’m not alone on this journey and that my body is telling the truth.

I’m able to process my grief over lost abilities, deteriorating health, and describe my experience and journey with inflammatory arthritis in a more universal way, without words.

3. My art allows me to show my life and struggles in a way that makes abled folks stop and take notice.

Visual representation helps other patients point to a piece that validates their pain and creates better connections between people.

4. People with inflammatory arthritis need to know that what they are experiencing is normal.

My art helps me and others cope better because we see visually what is happening invisibly to our bodies. It validates our experiences and lets us know we are not alone in what is happening to us.

5. Art reminds me how powerful my mind and heart are so I can pick myself up one more day and live for good instead of being lost in pain.

It gives me the ability to look back on a piece of artwork and remember the pain and my resilience and power in the face of intense circumstances.

It fulfills my need to be creative but also my need to take control of my life and body in a way that makes sense, allowing me to accept where I am.

It gives me the chance to process what is happening so I don’t fight the disease process. Art enables me to face my body and my life with courage and hope.

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03/31/2021
Medical Marijuana for Arthritis: Does Legal Status Affect Whether Patients Use It — or Talk to Their Doctor About It?
No matter who you talk to in the chronic pain, arthritis, and musculoskeletal disease community — patients, clinicians, researchers, public health experts — medical marijuana is controversial. Is it safe? Is it effective for treating pain and inflammation? Should it be legal?

While more clinical trials are sorely needed to understand the benefits and side effects of using medical marijuana to treat conditions like arthritis, it’s important to understand how patients think about and use marijuana to manage their conditions. The United States has a complicated quilt of state laws about the legal use of marijuana. Presently, 33 U.S. states have laws that allow for the legal use of marijuana for medical reasons, according to the National Conference of State Legislatures. (When you add recreational marijuana use and the legality of cannabidiol or CBD to the mix, things get even more confusing.) We have to recognize that its legal status may, in fact, influence whether patients use marijuana — or feel comfortable talking to their doctor about it. So researchers, including those from our non-profit organization, the Global Healthy Living Foundation (GHLF), set out to study this.

In research presented at the 2019 American College of Rheumatology/Association of Rheumatology Professionals (ACR/ARP) Annual Meeting in Atlanta, researchers surveyed 1,059 patients through the Chronicwoman patient community and the Chronicwoman research registry. Of those, 37 percent of people reported using marijuana for medical purposes, either presently or in the past. Of those, the majority said they did so to manage a specific health condition, such as:
- Rheumatoid arthritis: 51 percent
- Osteoarthritis: 46 percent
- Fibromyalgia: 35 percent
Nearly two-third of people currently using medical marijuana reported doing so at least once a day.

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How Medical Marijuana’s Legal Status Affects Patients’ Usage

In this study, 77 percent of current or past marijuana users live in a state where it is legal for medical reasons. Just 40 percent of current or past users said they used a medical marijuana card to purchase it. Among the 60 percent of study participants who did not use a medical marijuana card, the top reasons included:
- Not being legal where the patient lives: 42 percent
- Cost of marijuana is more expensive through a dispensary: 19 percent
- Difficulty getting a card: 18 percent
Of the approximately two-thirds of patients surveyed who said they had never used marijuana for medical purposes, illegality played a big role: 40 percent cited that as a reason they haven’t used it. Other reasons for not using marijuana included:
- Potential impairment: 24 percent
- Not knowing where to obtain it: 21 percent
- Not knowing how to obtain it: 20 percent
How Medical Marijuana’s Legal Status Affects the Doctor-Patient Relationship

Our research found that there was a link between whether medical marijuana was legal where patients lived and whether patients spoke with their doctor about their usage. Among patients who live in states where marijuana is medically legal, 68 percent said they told their doctor about using it, while only 54 percent of patients in states where medical marijuana was not legal talked with their doctor about it.

“It’s alarming that not everyone is telling their doctor about their marijuana use, regardless of its legal status,” says study co-author W. Benjamin Nowell, PhD, director of Patient-Centered Research at the Global Healthy Living Foundation. “It is important that your rheumatologist and other providers are aware of what you might be using in addition to prescribed medication.”

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A Lack of Research and Mixed Messages About Effectiveness

If you’re a patient who uses medical marijuana (or CBD, for that matter) to help treat your arthritis symptoms, your health care providers should know about it. Ideally, providers would make patients aware of potential side effects and interactions with other medications they use, advise on dosages, and help patients monitor and evaluate whether these treatments are helping. But our research, and that of others, indicates this isn’t always the case.

Earlier findings from the same survey, for example, noted that only 42 percent of patients perceived that their health care provider integrated their medical marijuana usage into their overall care (for example, made note of it and discussed how it fits in with other medications they take).

In a separate, unrelated study presented at the 2019 ACR meeting, when researchers at the University of Vermont Medical Center surveyed rheumatology clinicians about their patients’ usage of medical marijuana and CBD, they found that 45 percent of more than 100 doctors disagreed that marijuana or CBD should be recommended as medical therapy for people with rheumatologic conditions.

Here, legality may play a role too: More doctors who practiced in states where marijuana was legal for medical and recreational use said they were comfortable addressing questions about usage than in states where it was not legal. The authors concluded that “surrounding laws likely impact clinician perception and comfort with medical use.”

Part of this challenge is a dearth of solid research that rheumatologists and other doctors need to feel comfortable making recommendations to patients. In fact, in a recent paper published in the journal Expert Review of Clinical Immunology, researchers reviewed animal and human clinical studies on the use of cannabis for treating rheumatoid arthritis, osteoarthritis, systemic lupus erythematosus, systemic sclerosis, and fibromyalgia. “Despite the presence of studies supporting the benefits of cannabis, the researchers were unable to definitively conclude that cannabis or cannabis-related products are safe and effective for treatment of rheumatic diseases,” reported Clinical Pain Advisor. “They noted a gap between animal and clinical studies, as well as the paucity of studies examining long-term adverse effects. Large-scale clinical trials are necessary to examine the safety and efficacy of cannabis before it can be recommended for the management of rheumatoid arthritis, osteoarthritis, and fibromyalgia.”

“Indeed, our [Chronicillness.co and Chronicwoman.com] research shows that despite a lack of quality evidence to guide the usage of medical marijuana and regardless of its legal status, many patients with arthritis are using it — and need more support,” says study co-author Kelly Gavigan, MPH, manager of research and data science at the Global Healthy Living Foundation (GHLF). “We need high-quality randomized controlled clinical trials to better understand whether and how medical marijuana might be used to help patients manage these diseases, in conjunction with their recommended medication.”

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03/31/2021
These Are the Methotrexate Side Effects That Make Arthritis Patients Stop Taking It
Methotrexate (MTX) is considered a “first-line” therapy for rheumatoid arthritis (RA) and is also used to treat psoriatic arthritis (PsA). But despite the well-known benefits of helping to reduce symptoms and prevent disease progression, methotrexate has a very mixed reputation among arthritis patients.

Perhaps because MTX is so commonly prescribed, many inflammatory arthritis patients start to worry about whether or not they’ll have to take it almost as soon as they’re diagnosed. “For anyone with RA, initiation into the MTX club seems particularly harrowing,” RA patient and Chronicwoman contributor Dibs Baer wrote about starting to take methotrexate. “I admit that I waited weeks to start taking it when I first got diagnosed with RA.”

In particular, many patients have questions, concerns, and fears about side effects from taking methotrexate — everything from hair loss to serious, though rare, issues like liver toxicity.

Do patients’ concerns about the bothersome effects of methotrexate have an impact on whether they take the medication consistently? The benefits of early and consistent treatment of inflammatory arthritis are well established, so the fact that a patient’s discomfort with methotrexate could prevent them from taking their prescription is a serious issue.

If doctors knew more about patients’ main concerns regarding methotrexate, could they do a better job at preparing patients for the potential side effects and giving advice for how to manage them? These are all issues the rheumatology community needs to know more about, so researchers, including those from our nonprofit organization, the Global Healthy Living Foundation, set out to study this.

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In research presented at the 2019 American College of Rheumatology/Association of Rheumatology Professionals (ACR/ARP) Annual Meeting in Atlanta, researchers surveyed 371 patients with rheumatoid arthritis or psoriatic arthritis in the ArthritisPower research registry who were currently taking or had previously taken methotrexate. Here’s what we learned.

The Most Common Methotrexate Side Effect

Not surprisingly, the majority of patients surveyed reported that they experienced one or more side effects while taking methotrexate: 58 percent of current methotrexate users and 79 percent of people who had taken methotrexate but stopped. More research is currently underway to understand the degree to which MTX side effects play a role in whether people stop taking it.

When patients in the survey were asked about specific MTX side effects and whether they experience them, the most commonly reported one was fatigue. About 44 percent of patients reported fatigue or tiredness from the medication, both among those currently taking methotrexate and those who had previously taken methotrexate.

Methotrexate and GI Issues

Patients who stopped taking methotrexate reported having substantially more gastrointestinal issues — including nausea, abdominal pain, and loss of appetite — from methotrexate than current users did.
- Just 26 percent of current MTX users reported nausea, compared with 40 percent of those who used it previously.
- Just 9 percent of current MTX users reported abdominal pain, compared with 25 percent of those who used it previously.
- Just 14 percent of current MTX users reported diarrhea, compared with 18 percent of those who used it previously.
- Just 10 percent of current MTX users reported loss of appetite, compared with 17 percent of those who used it previously.
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Overall Perceptions of Methotrexate

However, despite many patients reporting side effects, those who currently take methotrexate consider the drug important in managing their disease and health. Nearly two thirds (65 percent) of current MTX users agree that the medication “protects me from becoming worse.”

About half (47 percent) said that their health depends on methotrexate. Forty three percent agreed that “my life would be impossible without my methotrexate.”

Managing Methotrexate Side Effects

If you’re taking methotrexate for your rheumatoid arthritis or psoriatic arthritis, it’s important to talk to your doctor about any side effects that you may be experiencing.

“We know many RA and PsA patients discontinue methotrexate with or without their physician’s knowledge,” says study coauthor W. Benjamin Nowell, PhD, director of Patient-Centered Research at the Global Healthy Living Foundation. “We hope this research provides insights to both patients and doctors about the side effects patients most often report and are most concerned about. Improving communication about these side effects and how to manage them may help patients to keep taking this beneficial medication or to request an effective alternative. Either way, it’s important to keep in mind that early, aggressive, and consistent treatment is the best way to improve their long-term outcomes.”

You and your doctor may discuss taking some of the following steps to reduce the side effects from taking methotrexate:

Take a folic acid supplement. Folic acid is a type of B vitamin that you need for your cells to divide and grow normally. Folic acid is also essential in the production of red blood cells. Methotrexate blocks some of the actions of folic acid, which can lead to side effects such as mouth sores, abdominal pain, liver problems, hair loss, and anemia. Taking folic acid supplements can help offset MTX side effects.

Take methotrexate after meals, which may reduce the risk of stomach upset. Your doctor may also consider prescribing other medication to help treat symptoms like nausea and vomiting.

Use a lower dose. According to the Hospital for Special Surgery, many MTX side effects can be resolved by lowering the dose. However, you should never lower the dose or stop taking methotrexate without the guidance of your doctor.

Take MTX close to the weekend. For patients who report fatigue to be an important side effect, taking the medication, which is often given weekly, on a Friday or Saturday can allow you to rest and recover over the weekend.

Consider the side effect profile of other medications you take. Many other drugs used to treat RA or PsA can also cause similar side effects. For example, some patients who use non-steroidal anti-inflammatory pain medication (NSAIDs) report gastrointestinal (GI) upset as a symptom. Make sure your doctor knows all of your medications and supplements, both over the counter and prescription, so they can help you minimize side effects and interactions.

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03/31/2021