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5 Things My Loved Ones Should Know About Life With Rheumatoid Arthritis

By Reanna Mathis

Image result for watching the sunset with you

There are so many things I do not know how to express or explain to the people who love me. The next five bullet points are some of the most important to me.

1. I never wanted to become sick.

I pray every day that God will see fit to heal me. At this point in my illness I do not even fully understand what is going on in my body most days. I just made a list of symptoms to show my doctor which was about 20 bullet points. I am hoping they will connect them to form a more solid diagnosis. I am hoping they have answers, that there is something to be found that is fixable. I have rheumatoid arthritis and have ignored it for many years. Not facing it has only made my symptoms worse. It can take six months sometimes for my body to recover from a flare, surgery, injury or infection.

2. Please be considerate and know I am trying my best.

I am actively involved in a couple different ministries and charities and I love the opportunity to serve. However, if I am there, know it is taking all my energy to get by. Please do not judge me for not being extra social or participating in every event. Please do not exclude me from group activities. I tend to leave as soon as the event is over and I sometimes get left out of group pictures and after event lunches or activities. It can be a painful reminder that I am disappearing from the lives of my friends.

3. There are weeks when I do not leave the house for days.

Texting and social media are very much a lifeline for me right now. Getting up and out of the house is taking an increasing amount of energy. So, I connect with friends via my phone. Sometimes I just need to text and share that I am having a bad day. Even if I do not receive a response, just being able to share it lightens the burden. The friends I do have in my life are very important to me. So, if one of them needs me, even if I cannot make it out, I am always available by phone or text.

4. I have a “knee-jerk” reaction to apologize.

I am always saying I am sorry. I apologize for apologizing too much. I have been trying to shift my behavior to saying thank you instead. Thank you for understanding, thank you for your help, thank you for including me and so on and so forth. Apologizing for my illness only makes me a victim to it, versus having gratitude for what I can do.

5. I do not want to hear how high your pain tolerance is.

That is a phrase I really do not like to hear. It is dismissive, ignorant and comes with an air of superiority. People with chronic pain probably have a high pain tolerance but the pain never goes away! It would wear down the toughest of the tough if there was no end in sight. I am really glad that your pain tolerance is high; that is a good thing. It is just very insensitive to say that to someone who has shared their struggle in chronic pain with you.

Please do not ever take your health for granted because we rarely get warning when things go bad. Becoming chronically ill can go from bad to worse very quickly. If you love someone with a chronic illness, tell them you appreciate the things they can do. Listen to them cry and resist the need to “fix” them. The more you try to fix them, the more broken they feel.

Green Tea May Help Ease Rheumatoid Arthritis Symptoms

Written by Ashley Boynes

For decades, green tea has been widely accepted as a “super food.” Now, researchers are finding that patients with RA may benefit from drinking green tea on a regular basis.

green tea and RA

An apple a day may keep the doctor away — but a cup of green tea won’t hurt, either.

A new study appearing in the medical journal, Arthritis and Rheumatology, shows that a compound found in green tea may hold promise in rheumatoid arthritis (RA) disease management.

Herbal teas have been in use to treat various ailments for literally thousands of years, with estimates of its medicinal use since before the beginning of recorded history.

green tea and RA

Green tea has been touted by health coaches, nutritionists, doctors, and dietitians for decades. The drink is particularly known for anti-oxidant properties.

Now, green tea is being heralded as way to reduce inflammation in the body as well. In fact, the recent study concludes the drink has potentially as a regularly prescribed treatment for patients with RA, although so far it has only been tested on mice.

Honing in on One Compound

The study, conducted by a team of researchers at Washington State University (WSU), focused on one particular compound found in herbal green tea.

Called epigallocatechin-3-gallate or EGCG, the compound appeared to reduce ankle swelling in a mouse model of rheumatoid arthritis.

This finding could be a potential source of hope for the nearly 1.7 million Americans who have RA. They currently are treated by NSAIDs, disease-modifying drugs, immunosuppressants, chemotherapy, biologics, biosimilars, corticosteroids, opioids, and narcotics. These treatments can be beneficial but may also carry certain risks.

While physical therapy and alternative practices such as chiropractic, massage, reiki, and acupuncture are also suggested to patients, rheumatology is just starting to recognize the important role that diet and nutrition play in the management of inflammatory autoimmune and rheumatic diseases.

The Arthritis Foundation stated in an article that a cup of tea can be good for overall health and that polyphenols help tea boost the immune system and fight inflammation.

“Our findings provide a rationale for targeting TAK1 for the treatment of RA with EGCG,” said Salah-uddin Ahmed, Ph.D., of the WSU College of Pharmacy and the study’s lead author.

He noted that other RA treatments may be effective but can also damage the immune system in the long run. Green tea, and in particularly this green tea compound, may be a promising alternative to expensive and potentially harmful RA treatments.

 

Quick, Effective Relief

Their study showed that, after 10 days of receiving ECGG, the mice with mouse models of RA, had a noticeable and significant reduction in their initial ankle swelling and inflammation.

The team of researchers figured out that EGCG reduced the activity of TAK1, a protein that plays a primary role in the response of cytokines that trigger inflammation and the resulting tissue damage in RA.

Perhaps just as notably, the green tea compound EGCG appeared to reduce inflammation in RA without interfering with other cellular functions in the mice.

Another study, published in the American Journal of Clinical Nutrition in 2012, showed other positive results for the consumption of green tea in moderation. This one was in regard to various functional disabilities that come along with aging.

Researchers from Tohoku University Graduate School of Medicine in Japan found that regular green tea drinkers carried a lower risk of developing functional disability, such as problems with daily tasks, household chores, and regular activities like bathing or dressing oneself.

 

What Do Experts and Patients Think?

Lindsey Smith of Pennsylvania, an alumna of the Institute for Integrative Nutrition as well as a health coach, author, and speaker says green tea has a variety of health benefits.

“Green tea contains powerful antioxidants, known as polyphenols, which help boost your body’s immune system, and can fight off infection,” she said. “This is good news for people that suffer from RA or other autoimmune diseases because your body will be better equipped to fight off infections and reduce overall inflammation in the body.”

Patients are mostly on board with the notion of trying green tea.

RA patient Debbie McGuire Djukic of the United Kingdom, said, “I think green tea is magical for just the relaxation benefits, if nothing else, and it has turned me onto trying a lot of other tea also. I have also gone gluten free and feel so much better to really cook healthy meals now.”

When I’ve drank green tea every day for longer than a few weeks, I’ve felt better, but usually that’s when I’m also eating better too.
Hilary Martin, rheumatoid arthritis patient

Hilary Martin of Ohio added that drinking green tea motivates her to eat better.

“When I’ve drank green tea every day for longer than a few weeks, I’ve felt better, but usually that’s when I’m also eating better too, so it’s hard to say,” she said, “but I know that it’s definitely made me feel good drinking tea versus soda or juice.”

But Julie Robbins of Illinois is slightly more skeptical.

“I have not had any help with my RA by any dietary changes, including green tea,” she said. “Of course, the best possible thing we can do is be as healthfully as possible. That is especially important since we have our risk factors increased for cardiac issues, simply by even having a RA diagnosis.”

Whether you believe or not that green tea may in any way contribute to the future of rheumatoid arthritis treatment and management, it’s probably safe to say that adding it into your healthy diet certainly couldn’t hurt.

What you should know about rheumatoid arthritis

To mark Rheumatoid Arthritis Week, we asked the experts to explain this painful condition and how it can be treated.

By Susan Griffin

 Arthritis

Unless you have rheumatoid arthritis (RA) or have witnessed a close friend or family member with the condition, it’s difficult to comprehend how debilitating the disease can be.

Rheumatoid arthritis is often misunderstood and commonly confused with osteoarthritis. But unlike that condition, which is commonly a wear and tear degenerative disease that generally affects the older population, RA can affect people of any age.

That’s just one of many misconceptions, along with the fact that nothing can be done to ease symptoms.

So to highlight Rheumatoid Awareness Week (which runs from 19-25 June), it’s time to examine the facts and debunk some of the long-held myths along the way.

What is rheumatoid arthritis?

Rheumatoid arthritis is a chronic, progressive and disabling autoimmune condition in which the immune system attacks the joint tissue causing inflammation, stiffness, pain and extreme fatigue.

Although the hands, feet and wrists are most commonly affected, it can affect any joint and if left untreated, the joint can lose its shape and alignment and lead to permanent disability.

It’s thought that around 690,000 people in the UK – that’s 1% of the population – have RA with around three quarters of people first diagnosed when of working age and women being three times as likely as men to have the disease.

What causes rheumatoid arthritis?

It’s nothing to do with lifestyle choices but like anything, if you smoke or are overweight, you’ve got a slightly increased risk.

Some also say there’s also a strong genetic factor, and other environmental factors that might play a bit of a role but probably it’s some sort of infection acquired and it’s your response to it.

What are the symptoms of rheumatoid arthritis?

Symptoms of RA include the three Ss: symmetry, stiffness and swelling. These can be painful, debilitating and progress rapidly, and have a devastating impact on the lives of patients and their families.

Those who suffer from it can find what was once the simplest of tasks, like getting out of a car or a chair, extremely difficult and painful.

Early assessment and diagnosis, combined with the right treatment, can effectively control RA, leading to a more normal life for patients than has ever been possible.

 

How is rheumatoid arthritis diagnosed?

RA is diagnosed using a series of tests including a physical examination, joint imaging and blood tests.

The progressive nature of RA means that without treatment, patients can suffer from irreversible joint damage and disability.

For this reason, primary care professionals must refer people with suspected persistent synovitis (active inflammation in a joint) to a rheumatology service within three working days of presentation.

Patients should then be seen by this service within three weeks of referral and offered a treatment within six weeks.

If you have the symptoms, get to your GP and you should get urgent, early referral to a specialist who has the appropriate facilities to do the drug tests and scans and can confirm the diagnosis.

Is there a cure?

There is no known cure for RA. The goal of clinicians and nurses is to ensure that people with RA are ‘pain free’. Uncontrolled RA is painful and learning to cope with chronic (long-lasting) pain may be the biggest challenge a patient with RA will face.

[Read more: Hairdresser beats the pain of arthritis by eating vegetables]

Can lifestyle changes help?

There are many things that people with RA can do to help reduce the pain they experience, such as meditation and relaxation, distraction (as focusing on pain makes it worse, not better), heat, cold, and massage can provide some quick relief for mild symptoms, and exercise, especially swimming, is particularly beneficial, along with a Mediterranean diet.

Tired all the time? Searching for a genetic link to chronic fatigue syndrome

Yawning can be highly contagious. And we are all familiar with that post-lunch energy letdown that comes after eating a big meal. That one is influenced both by our circadian rhythm and the consumption of lots of carbohydrates (some tips to fight it here). But these are the struggles with fatigue and exhaustion that everyone deals with. And they are far different from the energy-sapping experiences experienced by people with chronic fatigue syndrome.

Is your fatigue the ‘chronic’ kind?

Because there is no formal, agreed-upon name for the spectrum of issues this condition presents, the name myalgic encephalomyelitis (or ME) is more commonly used in Europe and Canada, while the name chronic fatigue syndrome (or CFS) is used more often in the United States and Australia. In order to develop a harmonized language to help with focusing resources to treat it, the acronym ME/CFS is increasingly being used worldwide. The National Institutes of Health Office of Disease Prevention describes ME/CFS as “a complex, multifaceted disorder characterized by extreme fatigue and a host of other symptoms that can worsen after physical or mental activity, but do not improve with rest.” There are about 1 million people in the US afflicted with the condition, according to estimates by the Centers for Disease Control and Prevention (CDC). Women appear to be slightly more likely to have it. However, there are problems with assessing true diagnoses because of variability from patient to patient.

It has been difficult to pin down the underlying mechanisms that cause ME/CFS. Clinically speaking, some believe it’s a central nervous system disorder, while others believe it’s metabolic, many have considered it to be infectious or post-infectious, or perhaps an immune dysregulation disorder. Some have also been proposing that ME/CFS is psychological or physiopsychological. There are no laboratory tests available to definitively identify and diagnose ME/CFS. So diagnosis is a process of exclusion (ruling-out various other diseases, and therefore being left with ME/CFS as a possibility).

There are no drug therapies approved by the U.S. Food and Drug Administration (FDA) to treat the condition, though there have been some promising early-stage trials of drugs under development.

Root causes

Some new theories suggest that indeed, there are metabolic shifts and physiological causes for ME/CFS. These include theories that the sufferers’ metabolism of sugars and amino acids is compromised, leading to a host of physical effects. A lot of this seems to be focused squarely on how pyruvate dehydrogenase (PDH) functions normally versus in someone with ME/CFS. PDH is crucial for moving carbohydrates (energy) into cell mitochondria, and in some people with diagnosed ME/CFS there appear to be dysfunctional levels of PDH.

It seems that blood levels of certain enzymes that deactivate PDH were higher in some people diagnosed with ME/CFS, along with deficits in certain amino acids that can be used for fuel as a proxy for carbohydrates. There are gender differences, though, in the prevalence of ME/CFS, as well as in sugar and amino acid metabolism between males and females, which confound some of the blood tests looking to link amino acid discrepancies definitively with ME/CFS. The interesting coincidence is that those with ME/CFS complain of severe fatigue, and also muscle soreness, which could be caused by compromised sugar metabolism as well as lactate levels increasing due to using amino acids for cellular energy. Whether this is a causal relationship or a happy coincidence with the new theory is unknown.

In a couple of very small studies (mostly by the same research group), patients suffering with ME/CFS were given a monoclonal antibody drug typically used for lymphoma (cancer) and rheumatoid arthritis. The drug seemed to eliminate symptoms of ME/CFS in a majority of the groups. The drug works by destroying antibody-producing B-cells, which may be at the locus of the enzymatic interference with PDH and other carbohydrate-metabolism pathways. It could be that there’s cross-reactivity with the antibodies and some component of PDH, which causes the interaction. This could offer hope for new treatment options by way of a drug that modulates the immune system.

One thing’s for sure, ME/CFS won’t be resolved without a complex and multivariate approach to tease apart its causes and develop effective and targeted solutions. Even if some of these preliminary studies lead to dead ends or dark alleys, those still provide information to us – a ‘null’ result is still a result and tells us a lot. It also ensures we don’t retread ineffective approaches and over time can narrow our focus on what really matters for developing effective treatments.

Ben Locwin, PhD, MBA, MS, is a contributor to the Genetic Literacy Project and is an author of a wide variety of scientific articles in books and magazines. He is an expert contact for the American Association of Pharmaceutical Scientists (AAPS), a committee member of the American Statistical Association (ASA), and has been featured by the CDC, the Associated Press, The Wall Street Journal, Forbes, and other media outlets. Follow him at @BenLocwin

Palindromic rheumatism (a cause of rheumatoid arthritis): Causes, symptoms, and treatment

By: Devon Andre

Palindromic rheumatism is a rare inflammatory condition and a precursor of rheumatoid arthritis, with about a third of patients progressing to the disease. Palindromic rheumatism is considered a form of inflammatory arthritis and is also goes by the name palindromic arthritis. It is characterized by flare-ups that start in one joint but may spread to others before settling down. Flare-ups are episodic in nature.

Causes and symptoms of palindromic rheumatismPalindromic rheumatism

Due to the rarity of the condition, little research on the topic has been done. However, previously done studies have shown that during episodes of palindromic rheumatism, inflammatory cells move into the lining of the joints, promoting the characteristic redness and swelling in the affected area. What triggers this reaction is unknown, though genetic factors have been suggested. Other possible reasons could include infection, imbalance of hormones, and even trauma. Palindromic rheumatism affects both men and women equally for all ages.

Symptoms often present with sudden and recurrent attacks of painful swelling in one or more joints, with attacks lasting as long as several days or just a few hours. It is common for patients to be symptom-free between these attacks. This inflammatory action may travel from joint to joint after the initial flare-up, but soon disappears with joints feeling normal after a short period. This inflammatory reaction is not known for causing damage to the joints. Over time, some individual with this condition may develop chronic joint inflammation and go on to develop rheumatoid arthritis. Other palindromic rheumatism symptoms may include:

  • Hot and tender joints
  • Inflamed, painful, and swollen tendons and areas around the joint (periarticular area)
  • Fatigue
  • Nodules under the skin near affected joints
  • The skin over the joint looking red
  • Feeling unwell
  • Mild fever

Diagnosing palindromic rheumatism

Odds are, if you happen to have this rare condition, your physician may not recognize it right away. The symptoms may be confused with other similarly presenting disorders, like rheumatoid arthritis, which may prompt your doctor to perform various tests in this regard, but will often come up inconclusive, further prolonging the diagnosis of palindromic rheumatism. This lack of obtaining a definite diagnosis right away will most likely lead to you seeing a specialize that the recommendation of your doctor, which will very likely lead to an accurate diagnosis of your condition. Specialists for conditions such as this are often called rheumatologists.

Unfortunately, no specific tests exist to diagnose palindromic rheumatism, but instead with the eye of a highly-trained doctor in the conditions, such as a rheumatologist, a diagnosis based on symptoms alone is often enough. This conclusion will often come after all other likely causes of similarly presenting symptoms have been ruled out become making a palindromic rheumatism diagnosis

 

Treatment of palindromic rheumatism

The most effective treatment strategy aims at decreasing the amount of inflammation occurring at the joint. Your doctor may recommend taking nonsteroidal anti-inflammatory drugs (NSAIDs), which can be effective in decreasing inflammatory episodes, as well as for controlling pain and stiffness.

Other medication such as hydroxychloroquine (Plaquenil) can help lower the frequency and length of attacks. It may also reduce the probability of developing rheumatoid arthritis in the future. This medication is typically not the first choice when treating palindromic rheumatism, but may be an option if your doctor feels it is the best form of therapy in your particular case. Blood monitoring, frequent checks for side effects, along with kidney and liver monitoring are often required for drugs like these for palindromic rheumatism treatment.

Tips for palindromic rheumatism patients

If you happen to have palindromic rheumatism, there are many things to keep in mind when facing recurrent attacks. The following can help ease your symptoms:

During an attack:

  • When experiencing severe pain, simply rest the joints. Wearing wrist splints and insoles for your shoes may also be helpful.
  • If you find the pain to be unbearable during episodes, you may need to increase your medication dosage.
  • Ice and heating pads are a quick way for relieving pain and swelling.
  • By pacing out your activities, you can help conserve energy and reduce fatigue.

Exercise: It may be useful to see a physiotherapist as they may help you find your best balance of rest and exercise. Staying active helps keep your joints working properly, but it is important to know your limits and not to overexert yourself, as palindromic rheumatism and fatigue commonly come together.

Diet: While no food has been conclusively identified to help palindromic rheumatism specifically, keeping a well-balanced diet that helps lose weight may keep you from putting excess tension and stress of your joints.

Work: A mild form of the condition is unlikely to significantly affect your work, but frequent and more severe inflammatory episodes may cause some difficulties. By making some necessary adjustments, you can cope with such symptoms more effectively. If you find you are unable to work due to your condition, there may be programs available that help those with disabilities.

Sex and pregnancy: Constant feeling of fatigue and pain may be off-putting when thinking about having sex, but during the symptom-free times between episodes, having sex should be a relatively pain-free experience. If you are looking to become pregnant and are currently taking certain medications for the treatment of palindromic rheumatism, it is best to speak to your doctor first and make the necessary medication adjustments, as they may interfere with normal fetal development.

Drink Thyme Tea Every Morning to Help With Fibromyalgia, Hashimoto’s, Rheumatoid Arthritis, Lupus, and Multiple Sclerosis.

By Erin Elizabeth

Did you know that down through the centuries thyme has been used for many ailments, from influenza to epileptic seizures?  It was often mixed with equal parts of lavender and sprinkled on the floors of churches in the Middle Ages to eliminate any unwanted odors. Long before the discovery of modern medicine, crushed thyme was placed on bandages to promote wound healing and ward off infection.

The volatile essential oils in thyme are loaded with anti-rheumatic, anti-parasiticanti-septic, anti-viral, and anti-fungal properties.

If taken on a regular basis it can significantly help to reduce the viral load in the body which makes it very beneficial in dealing with Chronic Fatigue Syndrome, Fibromyalgia, Hashimoto’s Thyroiditis, Rheumatoid Arthritis, Lupus, Vertigo, Tinnitus, and Multiple Sclerosis.

Thyme is packed with vitamins and minerals. It’s rich in potassium, iron and calcium, all of which contribute to blood pressure regulation, proper red blood cell formation and distribution of antioxidants in the body.  It is rich in high in B-complex vitamins, vitamin A, C and folic acid. Thyme contains a variety of important bioflavonoids and volatile oils, including thymol. Thymol is an essential oil that has very powerful antioxidant properties.

Thyme has cancer preventive properties; containing terpenoids like rosmarinic andursolic acids. (Regular consumption of thyme has been shown to increase the amount of DHA (docosahexaenoic acid, an omega-3 fatty acid) in brain, kidney, and heart cell membranes).

Thyme’s essential oils have expectorant and bronchial antispasmodic properties treating…

  • acute and chronic bronchitis
  • sore throats
  • coughs
  • laryngitis
  • asthma
  • treats inflammation of the mouth
  • throat infections
  • prevent gingivitis

Drink Thyme Tea Every Morning to Help Cure Fibromyalgia, Hashimoto’s, Rheumatoid Arthritis, Lupus, and Multiple Sclerosis.

How to Make Thyme Tea

Ingredients:

  • Thyme (dried or a handful of fresh)
  • A covered container for brewing & straining
  • Mug

How to make Thyme Tea, Instructions.

1) Put some herbs in your brewing container – about 1 tsp dried herbs per cup of water.  For fresh herbs, use more.

2) Pour over water that’s just off the boil.

3) Cover and infuse for about 5 minutes.

4) Strain and serve.

*Article originally appeared at Living Traditionally.

7 Summer Foods to Fight Arthritis

Back pain symptoms – THIS could be a sign your condition is SERIOUS

BACK pain – particularly pain in the lower back – is a common problem that affects most people at some point in their life. The majority of cases are not serious – but experts have revealed the serious symptoms people should look out for.

By OLIVIA LERCHE

Experts have said most people suffering with back pain should be remaining active to ease their symptoms.

The Chartered Society of Physiotherapy (CSP) said: “Your back is stronger than you may think.

Most people worldwide will experience back pain during their lifetime.

“It can be disabling and worrying but it is very common and rarely dangerous. The spine is a strong, stable structure and not easily damaged so in most instances it is a simple sprain or strain.

“In these cases – 98 per cent, according to research – people recover reasonably quickly, and many do so without treatment.

Back pain symptoms: Feeling unwell with your back pain could be a warning sign

Back pain symptoms: Feeling unwell with your back pain could be a warning sign

Back pain symptoms: Severe back pain could be a warning sign of another condition

 

6 Simple exercises to prevent painful back pain

The society said: “These symptoms are very rare but you should contact a doctor if you experience any of them.”These include:
• Feeling unwell with your back pain such as a fever or significant sweating that wakes you from sleep
• Difficulty passing urine or having the sensation to pass water that is not there
• Impaired sexual function such as loss of sensation during intercourse
• Numbness or tingling in your genitals or buttocks area
• Loss of bladder or bowel control
• Loss of power in your legs.

Back pain symptoms: Experts advise people to avoid bedrest unless symptoms are serious

GETTYBack pain symptoms: Experts advise people to avoid bedrest unless symptoms are serious

NHS Choices said: “Very rarely, back pain can be a sign of a serious problem such as a broken bone in the spine, an infection, cauda equina syndrome (where the nerves in the lower back become severely compressed) or cancer.”Medical conditions which can cause back pain include a slipped disc – which can cause back pain and numbness and tingling, sciatica – which can cause pain, numbness tingling and weakness in the lower back, legs and feet and ankylosing spondylitis – a swelling of the joints in the spine.Experts said people with back pain should try to stay in work and resume normal activities.

The CSP said: “Avoid bedrest, stay in work and gradually resume normal activities.

“Scientific studies now indicate prolonged rest and avoidance of activity for people with low back pain actually leads to higher levels of pain, greater disability, poorer recovery and longer absence from work.

“In the first few days of a new episode of low back pain, avoiding aggravating activities may help to relieve pain.

“However, staying as active as possible and returning to all usual activities gradually is actually important in aiding recovery – this includes staying in work where possible.”

Arthritis symptoms – painful joints could be a sign of THIS life-threatening condition

ARTHRITIS – either osteoarthritis or rheumatoid arthritis – causes pain the in joints, including the hips, wrists, ankles and knees.

By OLIVIA LERCHE

Arthritis symptoms: Joint pain could be a sign of septic arthritis
Arthritis symptoms: Joint pain could be a sign of septic arthritis
Osteoarthritis affects around 4 million people in the UK every year.When a joint develops osteoarthritis, some of the cartilage covering the ends of the bones gradually roughens and becomes thin, and the bone underneath thickens.Rheumatoid arthritis is a serious and disabling autoimmune disease in which the immune system mistakenly attacks and destroys healthy body tissue.

It affects more than 690,000 people in the UK, of which over 500,000 are women and around three-quarters are of working age.

Arthritis symptoms: Joint pain could be a sign of septic arthritis which could be life-threateningGETTY

Arthritis symptoms: Joint pain could be a sign of septic arthritis which could be life-threatening

However there is one form of arthritis – which occurs most commonly in the knees and hips.Septic arthritis is the inflammation of a joint which is caused by a bacterial infection.It is also known as bacterial arthritis, or even infections arthritis.

Any joint can be affected by the condition but it occurs most frequently in the knees and hips. However there is one form of arthritis – which occurs most commonly in the knees and hips.

What are the symptoms of arthritis?

 

Arthritis symptoms: Joint pain could be a sign of septic arthritis

Arthritis symptoms: Joint pain could be a sign of septic arthritis

Septic arthritis is the inflammation of a joint which is caused by a bacterial infection.It is also known as bacterial arthritis, or even infections arthritis.Any joint can be affected by the condition but it occurs most frequently in the knees and hips. There are number of factors which can increase the risk of developing the condition, including having joint surgery, such as a knee replacement or hip replacement, having a bacterial infection somewhere else in your body and having a long term condition.

Having rheumatoid arthritis can increase the risk of developing the condition.

Experts also warn that using injected drugs, or medication which suppresses the immune system can also be a factor.

Back pain affects 80% of people at some stage in their lifeGout is caused by the build up of uric acid in the body that forms crystals and causes pain in the joints

Invasive bacterial infections caused by Staphylococcus aureus and Streptococcus pyogenes bacteria can be life-threatening and fatal, causing sepsis – blood poisoning, pneumonia and Toxic Shock Syndrome.

The bacteria, which normally lives harmlessly on the skin, nose or mouth but can invade the body’s bloodstream and release poisonous toxins.

Toxins can damage tissue skin and organs and can disturb vital organ functions.

If doctors suspect pain could be a symptom of septic arthritis, GPs are likely to refer patients to A&E, where they will give patients a blood test.

The condition is usually treated with antibiotics and often fluid will have to be drained from one of the affected joints.

Failure to warn: Hundreds died while taking an arthritis drug, but nobody alerted patients

By CHARLES PILLER

This is the first of two stories on monitoring the safety of new drugs — read the second here. 

hen a new remedy for rheumatoid arthritis arrived, ads called it a “unique” breakthrough that would “transform expectations” for patients and doctors. “If I knew then what I know now about rheumatoid arthritis, I would have been more proactive,” said one young woman, pictured happily kayaking.

Treatments for the disabling disease afflicting about 1.5 million Americans can have terrifying side effects, so doctors and patients were excited when Actemra reached the U.S. market in 2010. Unlike competing drugs, it wasn’t associated with heart attacks, heart failure, or life-threatening lung complications.

Yet hundreds of patients taking Actemra have died from such problems, and many more have suffered harm. STAT analyzed more than 500,000 side-effect reports on rheumatoid arthritis drugs, and found clear evidence that the risks of heart attacks, strokes, heart failure, and other conditions were as high or higher for Actemra patients than for patients taking some competing drugs.

Most of those medications warn about these risks on their labels. Actemra does not.

Consumers are barraged every day with drug ads accompanied by numbing lists of side effects, but STAT’s investigation shows that the risks to patients might be greater than they are led to believe. The Food and Drug Administration has received reports on 1,128 people who died after taking Actemra, and has reviewed its safety several times since it was approved. But the agency doesn’t have sophisticated tools to determine whether the drug was a culprit or a bystander in those deaths.

Though the agency is charged with monitoring the safety of prescription drugs, it doesn’t verify the side-effect reports it receives. The documents often lack crucial information, and they don’t prove that Actemra was the cause. Still, they can be telling.

In one striking example, obtained through the Freedom of Information Act, a doctor said no factor other than the drug could have explained a 73-year-old man’s fatal brain bleed two days after receiving an intravenous Actemra treatment. Another said of a 62-year-old German woman’s heart attack in 2014: “The company assessed fatal myocardial infarction as related to (Actemra).” That company was Roche, Actemra’s manufacturer.

But neither Roche nor the FDA has moved to change Actemra’s label to alert patients and doctors that potential risks turned up in the reports, as well as in clinical studies completed after the drug went on the market.

Experts who examined the data at STAT’s request said the FDA should immediately consider warnings for heart failure and pancreatitis — an inflammation of the pancreas that in its acute form can kill up to 50 percent of patients. They said the evidence that Actemra might increase the risk of heart attacks, strokes, and interstitial lung disease, a sometimes-fatal scarring of lung tissue, is less convincing but warrants further review.

The failure to warn the public, experts say, highlights the FDA’s inability to adequately scrutinize the safety of drugs after they have been approved, and to act promptly when potential danger signs appear.

“We’ve done a very good job of making it easier to approve drugs, often based on very preliminary evidence. But we haven’t ramped up the standards of post-marketing surveillance to make sure that what’s been out there for several years is safe and effective,” said Dr. Vinay Prasad, an oncologist and medical ethicist at the Oregon Health and Science University. “The system is broken, and all the financial incentives are lined up to keep it broken.”

The FDA has been trying for years to strengthen its monitoring of drugs, so far without much success. In 2015, the Government Accountability Office reported that the “FDA lacks reliable, readily accessible data” needed for systematic oversight and to ensure that drug companies comply with agreements to track safety after a drug comes to market.

It has spent $207 million since 2009 to build a troubled big-data system called Sentinel that scours insurance company records for serious side effects of recently approved drugs. Among its major shortcomings, critics say: It’s missing most data on deaths related to prescription drugs. The agency would not say if a Sentinel assessment of Actemra, also known by the generic name tocilizumab, has ever been initiated.

Sentinel’s track record is all the more worrisome amid the rise of an approve-first, monitor-later philosophy in Washington. The recently passed 21st Century Cures Act is intended to speed federal sign-off on new medicines by streamlining pre-approval reviews of drug safety and efficacy. The Trump administration and prominent members of Congress are itching to push drugs through the regulatory pipeline faster than ever, then hope to catch any missed safety problems after they’re on the market.

Taken intravenously or by injection, Actemra has been used by more than 760,000 patients globally and generated sales of $1.7 billion last year, making it Roche’s fifth highest-grossing drug. While primarily used to treat rheumatoid arthritis — an autoimmune disease that causes pain, swelling, and stiffness in joints — doctors prescribe the drug “off-label” for about 60 other conditions for which it has not completed testing for efficacy and safety.

The FDA declined to comment about Actemra. In a written statement, a spokeswoman said the agency “continually monitors postmarketing safety of approved drug products and remains committed to informing the public in a timely manner when the FDA identifies safety issues.”

Dr. Jeffrey Siegel, senior medical director for rheumatology products at Roche and its subsidiary Genentech, said STAT’s examination of Actemra included “important questions that we think about all the time. … We try very hard not to be complacent, and to fully explore these issues.”

In an interview at Genentech’s headquarters in South San Francisco, he cited a recent study as “definitive” proof that the drug does not increase cardiovascular risk. But experts consulted by STAT disputed that claim.

In 2008, when FDA scientific advisers met at a Silver Spring, Md., hotel near the agency’s headquarters to debate whether to recommend approval of Actemra, they were haunted by a notorious error just a few years earlier.

Vioxx, another arthritis drug, had been pulled from the market after it was implicated in tens of thousands of heart attack deaths, a problem that hadn’t shown up in the short-term clinical trials used for approval. Those early studies suggested Vioxx would be safer for patients than existing medicines. The new drug, Actemra, similarly seemed relatively safe based on short-term studies.

“I can foresee the possibility that in five years there’s another hearing like the one on Vioxx, where the cardiologists … say to us, what were you guys thinking when you approved this drug?” Dr. David Felson, a Boston University rheumatologist, worried aloud, according to a transcript of the Actemra meeting. He described patient blood test data showing elevated levels of the blood lipids cholesterol and triglyceride, suggesting that Actemra might cause serious heart problems over time.

Felson and every other scientific adviser ultimately recommended approval, on one condition: Roche would sponsor multiyear studies to monitor for unseen problems and cardiovascular events. In the meantime, no mention of those possible hazards would appear on Actemra’s label — the key reference doctors and patients use to weigh a drug’s risks and benefits.

In a recent interview, Felson called STAT’s findings “noteworthy and concerning.” He said Siegel’s assertion that Actemra’s cardiovascular safety had been proved “sounds like a drug company trying to defend themselves.”

Alicia Airs
Alicia Airs, 40, of Youngstown, Ohio, said her doctor told her that Actemra had minimal side effects when prescribing it for her rheumatoid arthritis.STEPHANIE STRASBURG FOR STAT

‘I just want it straight’

Actemra might not be more dangerous than other arthritis drugs — many of which can have lethal side effects — but patients and doctors are misled into believing it might be safer because frequently reported, serious problems aren’t noted on its warning label.

Alicia Airs of Boardman Township, Ohio, said her doctor told her that Actemra had minimal side effects when prescribing it for her rheumatoid arthritis. But Airs, 40, said she suffered heart palpitations for days immediately after her first Actemra infusion in April.

This symptom — often reported by other patients on social media and in complaints to the FDA — is not listed on the drug’s warning label. When she sought help, her rheumatologist told her he’d never heard of such a side effect and referred her to her general practitioner.

“When I went to the [general] doctor, they offered me an antidepressant, but I said I’m not anxious,” said Airs, still angry. “If you give them a symptom they don’t know, they treat you like you’re a little crazy … I felt like I was dismissed.”

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Rheumatoid arthritis is different from the more common osteoarthritis, which is primarily a disease of old age. It often starts in middle age, but it also affects children and young adults like Alejandra Calzadillas, a 25-year old student in Seattle. She said that after starting Actemra, she experienced memory lapses and mental sluggishness she called “brain fog.”

“I’ve had moments where I’ve gone to start my car … and not remembered how to turn it on,” or at other times forgotten how to put on makeup, she said. Such cognitive side effects are not listed on the drug’s label but are a common complaint among Actemra users.

“It’s terrifying with a drug when you come to the realization that you haven’t been warned by your doctors,” Calzadillas said. “It kind of ruins your life.”

In interviews and reports to the FDA, patients described other unlabeled adverse events, including the heart-rhythm disorder tachycardia, small strokes, and tremors.

“I don’t want any sugar coating — I just want it straight,” Michelle Lucci, a 53-year-old banking consultant near Tampa, Fla., said in an interview. She suffered something else doctors don’t warn about: hair loss — another common complaint.

“Why would you use something that would do that when there are 15 other drugs to try? That was really depressing,” Lucci said. “[Actemra] has been a miracle for some people. But I think that on the whole, more people have serious side effects.”

Signals of harm

In a review of millions of reports to the FDA involving more than 100 drugs approved since 2010, Actemra stood out. It showed that Actemra patients had experienced an unusually large number of serious side effects that didn’t appear on the drug’s warning label.

The initial review was performed for STAT by Advera Health Analytics in Santa Rosa, Calif., a company that collects and curates drug-related complaints to the FDA Adverse Events Reporting System, known as FAERS. The company then provided comparison data for all major rheumatoid arthritis drugs.

STAT’s analysis of that data, including more than 13,500 FAERS reports on Actemra, showed higher than expected numbers of several serious problems when compared to competing drugs. These included the blockbusters Humira and Remicade, which have many more users.

For example, about the same number of cases of interstitial lung disease have been reported in Actemra users as have been experienced by Humira users, and many more cases than with Remicade. The other drugs’ labels warn about that possible side effect. Actemra’s does not.

The results were similar for heart attacks, strokes, and heart failure. None of these conditions appears on Actemra’s label, while both Humira’s and Remicade’s warn about heart attacks and heart failure, and Humira’s also lists stroke as a risk.

Pancreatitis was reported in 132 patients taking Actemra, including 26 who died.

“Pancreatitis is very, very rare” and potentially life-threatening, Felson said, so that many cases is a serious matter. The disorder is known to be triggered by high cholesterol levels, and Actemra is known to increase these lipids, he noted. “So if I see a signal for pancreatitis among [Actemra] users, I would be worried.”

The actual number of deaths among Actemra users is likely higher, because the FDA monitoring system captures a fraction of adverse events that patients experience. Patients and their doctors are not obligated to report to the FDA or to drug companies, and the agency and outside experts have estimated that these filings represent only about 10 percent of cases, although some say the rate might have increased in recent years.

Dr. Eric Brodsky, associate director of the agency’s drug labeling development team, said there are numerous other challenges in using FAERS data. Inaccuracies, concurrent illnesses, and effects of other drugs a patient may be taking mean FAERS reports can “show an association, but not a causal relationship,” he said — signals of harm, not proof.

Adding warnings based on uncertain evidence from FAERS, said Roche’s Siegel, “would be a disservice to clinicians, because it would raise the concern of something where there really isn’t a risk.”

One difficulty in assessing whether arthritis drugs cause cardiovascular problems is that the disease itself is a risk factor for heart disease. That’s where longer-term and larger post-marketing safety studies can help.

In one of these studies, required by the FDA, Actemra was compared head-to-head with another arthritis drug — Enbrel, whose label strongly cautions about use by patients with cardiovascular disease, particularly heart failure. That was the study Siegel called “definitive” evidence of Actemra’s safety.

It found rates of stroke and heart failure were about 1.5 times higher in Actemra patients. That difference wasn’t statistically significant, but experts told STAT it was still worrisome.

“Since Enbrel includes a high-profile warning and precaution in the label about heart failure, it is concerning that Actemra might be similar or worse,” said Dr. Steven Woloshin, a professor of medicine at The Dartmouth Institute and an expert on risk communication.

Felson concurred. While the actual risk remains statistically uncertain, he said, if Enbrel’s label warns for heart failure, the FDA should consider that warning for Actemra.

Dr. David Pisetsky, a professor at Duke University who served with Felson on the FDA advisory panel for Actemra, cited another recent study, based on thousands of insurance claims, which concluded there was no increased cardiovascular risk among patients on the drug. But the study found nearly identical rates of heart attacks and strokes among users of competing drugs — some of which are labeled for those problems.

“If the rates are similar, it should be on the (Actemra) warning label,” although the company and FDA might have additional data to consider, Pisetsky said.

There was a lone dissenter on the 2008 FDA advisory panel that recommended Actemra’s approval — the single nonexpert, consumer representative Diane Aronson. She called STAT’s findings “very troubling.”

“As a ‘no’ voter, I felt there wasn’t enough data, it was too short-term,” Aronson said in an interview, regarding the research supporting approval. “There were some red flags.” Others on the panel nonetheless supported the drug because they “really believe that the long-term studies will be acted upon” and the warning label adjusted if needed, she said. “That’s why they voted ‘yes.’”

That hasn’t happened.

Alejandra Calzadillas
Alejandra Calzadillas, 25, said that she experienced memory lapses and mental sluggishness after starting Actemra.COURTESY ALEJANDRA CALZADILLAS
Alejandra Calzadillas
COURTESY ALEJANDRA CALZADILLAS

FDA scrutiny

Actemra has appeared on the FDA’s radar at least three times since it was approved in 2010, but most safety concerns have been set aside — once after Genentech pushed back against an agency recommendation to expand the warning label.

In 2011, “fatal anaphylaxis” was added to the label, at Roche’s request, after two deaths occurred.

A year later, Roche asked the FDA to allow wider use of Actemra, for patients who have failed to get relief from only one other type of rheumatoid arthritis drug, rather than two. In its review, the agency found 258 cases of pancreatitis and 185 of interstitial lung disease among Actemra users in clinical trials, FAERS, and epidemiological data, according to a 2012 report.

An FDA clinical expert said that despite uncertainty in the pancreatitis data, a warning should be included on the drug label “given the potential seriousness of the event.” The expert wrote that interstitial lung disease should be monitored closely.

“The system is broken, and all the financial incentives are lined up to keep it broken.”

DR. VINAY PRASAD, AN ONCOLOGIST AT THE OREGON HEALTH AND SCIENCE UNIVERSITY

But Genentech convinced the agency not to label for pancreatitis, arguing that the illness, like interstitial lung disease, had occurred at expected rates for rheumatoid arthritis patients. Without providing specifics about the company’s arguments, the FDA report said there wasn’t “sufficient evidence to support causality and include information in the product label at this time.” The agency approved the broader use of Actemra.

In 2013, the FDA drew the same conclusion about pancreatitis in a full safety review of Actemra, required by law 18 months following approval or after 10,000 patients have taken a medicine. STAT obtained the report — heavily redacted to protect commercial secrets — under the Freedom of Information Act.

It addressed progress on ongoing studies and about 3,500 reports to FAERS that had arrived as of August 2012, including 118 deaths — 42 linked to cardiac arrest or myocardial infarction. The FDA concluded that no further label changes were warranted.

The report said the heart attack cases were confounded by such factors as age or a history of heart problems, and by rheumatoid arthritis itself. And it noted that rates of serious adverse events, including heart disorders, “have remained stable or decreased numerically over time.”

The agency said it would revisit the issue when a long-term cardiovascular safety study was completed. That was the study published last year that compared Actemra to Enbrel. The FDA and Genentech declined to say whether this latest data had been analyzed by the agency.

Federal law requires companies to ensure accurate labeling. The FDA can force changes when serious hazards come to light after approval. Companies that don’t comply can be fined up to $10 million. But an FDA spokesperson said the agency had never fined a company for labeling failures.

That might be because once a drug has been approved, “the leverage that the FDA has is infinitely smaller,” said Dr. Caleb Alexander, co-director of the Johns Hopkins Center for Drug Safety and Effectiveness.

“We are so reliant on a strong, impartial, and scientifically driven Food and Drug Administration,” he said, calling the agency’s unwillingness to talk about Actemra troublingly typical. “This is exactly the type of setting where greater transparency on the part of the FDA would be welcome” — ongoing evaluations of “extremely serious risks associated with specific products.”

Some critics point to a revolving door culture — with FDA scientists regularly moving to more lucrative jobs with the companies they once regulated — as another concern, saying it can foster a cozy relationship between the agency and the drug industry.

Siegel, for example, was an FDA manager who guided Actemra through its approval before leaving a few months later for Roche and Genentech to oversee further development of the drug. He said the timing was coincidental and unrelated to his review of Actemra for the FDA.

Federal rules prohibit him from representing his employer before the agency on specific projects he worked on as a government official, including Actemra’s use for rheumatoid arthritis, he said. But he does work with the FDA to gain approval for other uses of the drug, based partly on safety data he evaluated as a government official.

Abundant conflicts in safety studies

The FDA relies heavily on post-marketing studies to monitor drugs’ safety, research that is almost always funded and conducted by the companies making the medications. That was the case with Actemra.

“One of the recurring criticisms of our drug safety system is that we rely upon the very companies that are so financially invested in a product’s success to conduct the studies that explore safety concerns,” Alexander said.

All 11 authors of the Roche-funded study Siegel called “definitive” disclosed financial conflicts with either Roche or Genentech, including five who worked for these companies. Similarly, three of the seven authors of the insurance claims study, funded by Genentech, were company employees, and three others disclosed financial conflicts with Genentech.

The companies also pay consulting fees and offer perks to many other academic researchers, and fund leading rheumatoid arthritis registries that track patient outcomes over many years.

For example, they paid Dr. Joel Kremer, founder and chief medical officer of the Corrona registry — the largest such organization — about $130,000 for research, consulting, and travel from 2013 to 2015, according to the federal Open Payments database. Corrona, a Southborough, Mass., company owned primarily by a private equity firm, guards its data closely. Corrona CEO Raymond Hill would not identify the group’s scientific advisers, citing privacy concerns, and said its data are restricted primarily to paying customers, such as Genentech.

Dr. David Blumenthal, a Veterans Affairs rheumatologist and professor at Case Western Reserve University in Cleveland, said he doesn’t think the evidence of harm from Actemra is yet strong enough to warrant label changes. But Blumenthal, who also served on the FDA advisory committee before Actemra was approved, said he worries about manufacturers’ influence over research.

“The companies don’t want to kill the golden goose,” he said. “I always wonder whether industry is basically commissioning a paper, knowing what the results are going to be, to get a certain point of view out in the literature. In the world of politics, this is like the difference between real news and fake news.”

Prasad, of Oregon Health and Science University, argued that the FDA should design and manage large post-market trials, paid for but not influenced by the industry.

“So much of the data is in the hands of people who are conflicted,” he said. “We have to ask ourselves if the current system is in the interests of public health.”

For all the questions about Actemra, its market and Genentech’s profit potential keep growing.

In May, the FDA approved Actemra to treat giant cell arteritis, an inflammation of the blood vessels that, like rheumatoid arthritis, is an autoimmune disease. It based the decision on a one-year study by Genentech that involved just 149 patients who took the drug. In a press release, the FDA said the trial’s “overall safety profile … was generally consistent with the known safety profile of Actemra.”

 

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