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From the staff at RheumatoidArthritis.net

We are excited to let you know that there is a new opportunity for you to make a difference in rheumatoid arthritis (RA) research!

While most of us know that new medicines to treat RA are being examined in clinical trials, few of us actually have the tools to access those trials. We want you to have a place to share your voice and really make a difference in the future of RA treatment.

Starting this month, we will be offering the chance for RheumatoidArthritis.net community members to learn more about clinical trials performed by organizations researching new treatments for RA.

REGISTER NOW

What sort of research is being conducted for people like me?

There are many ways to take part in research, one of which is to participate in a clinical trial.

      • Treatment efficacy & safety: This could mean taking part in a study for a new treatment that is in development, or even for an existing medication that is now being examined in RA.
      • Trial design and drug development: Researchers may also look for your feedback in the design of a clinical trial or the treatment itself (for instance – should it be an injection or a pill?). To learn more about participating in clinical trials, here)
      • Behavioral and impact studies: Other research focuses on gathering information about how people with RA manage their condition and how it impacts their daily lives. Results from our own RA in America survey demonstrate the far-reaching impact of RA.

Why does this matter?

No one understands what it is like to live with RA better than the RA community! Taking part in cutting edge research or providing input on how studies are conducted will have a direct impact on those living with RA.

How do I find out about new research opportunities?

When new research opportunities become available, we will share those with our community members via email and social media. Please note that registered members of the community will always receive the first notifications regarding opportunities.

Registration is free and easy – You can register HERE

keep-calm-it-s-only-c-diffThe comedy of medical errors continues after the myelogram/CT scan on May 21st designed to gather information about my neck and back. That intervention resulted in a case of bacterial meningitis, hospitalization, and ten days on a strong, broad spectrum (kills most everything) antibiotic called ceftriaxone administered via infusion through a PICC line. The meningitis was vanquished and the PICC line pulled. But then a secondary infection took root.

One of the listed side effects for cephalasporin antibiotics like ceftriaxone are that they kill many of the helpful bacteria living in the gut but do not kill potentially harmful microbes including one called Clostridium difficile or C diff. Symptoms of C diff include the following:

There is a lab test for the bacteria (don’t ask about how it is obtained). When C diff bacteria gain a foothold in the intestines, they release toxins that damage the intestines (colitis) and the toxins can get into the bloodstream. Dehydration is a major concern. It is a spore forming bacteria and the spores are difficult to kill. It is a common infection in hospitals and other health care facilities and is especially problematic in elderly, unhealthy, and immunocompromised patients (hey, that last one is me!). Over 500,000 Americans get C diff annually with almost 30,000 deaths associated with the infection annually. C diff is now seen as a more serious hospital related infection risk than even the much-feared MRSA staph bacteria.

Treatment for C diff starts with an antibiotic. Metronidazole, or Flagyl, is usually the first line antibiotic used for C diff. But my infectious disease docter went straight to the second line antibiotic, vancomycin, when he learned that I take Rituxan for RA and am immunocompromised. I’m currently taking an oral version of vanco. Up to 20% of patients relapse after the first round of antibiotics and must take additional rounds. If the good bacteria are wiped out, then it stands to reason that probiotics may be helpful in repopulating these flora. The research results on probiotics for C diff are mixed but my doctor recommended that I take them. I opted to take a medical grade probiotic called VSL #3. There are published research studies that the bacteria strains in VSL #3 help colitis symptoms. It’s available at many pharmacies but is kept behind the counter in a refrigerator.

It seems that RA is the gift that keeps on giving. I’ll just be glad to move onto the more “traditional” primary RA issues!

I don’t believe that living with RA means we’re always looking over our shoulders for infections. However, it is important to make some informed decisions.

Since being diagnosed with RA, I’ve dealt with a variety of infections. Besides the usual viral, upper respiratory infections, there have been a few bacterial infections. The first was a urinary tract infection (UTI) that is not very common in men. A dose of antibiotics took care of it in rapid form. A few years’ later, chronic sinus infections were the plague of the day. After culturing bacteria from samples, many months of multiple antibiotic treatments were in order. When that failed to take care of the infection, sinus surgery finally cleared up the issue. The most recent infectious ordeal was a battle with bacterial meningitis. Two trips to the emergency room and admission for an overnight stay in the hospital were the result of this recent escapade. It culminated in the installation of a peripherally inserted central catheter or PICC line so I could self-infuse a strong antibiotic. This infection didn’t just come from the blue but was likely connected to a lumbar puncture conducted for injecting iodine contrast for a CT scan of my neck. The fact that I’m immunocompromised from taking the biologic Rituxan (Kelesidis et al., 2011)1 caused the doctors to take an aggressive approach in treating the meningitis even though it was considered a “mild” case. One doctor compared me to an “immunocompetent” person who is able to better fight off an infection.

In a study predicting infections in RA patients, it was found that 64% had at least one infection and almost 50% had an infection requiring hospitalization (Doran, et al., 2002)…

Read the rest of the article at http://rheumatoidarthritis.net/blog/is-there-an-increased-risk-of-infection/

100-Pound Weakling

As documented in an earlier post, a recent battle with bacterial meningitis was likely caused by a myelogram/CT scan ordered to check out potential joint damage in the neck and back. After 10 days on an IV antibiotic, the infectious disease doctor said that the antibiotic could be stopped and he pulled the PICC line – a welcome word indeed! While the original CT scan showed some narrowing of the opening in the vertebrae for the nerve roots, it failed to completely explain the ongoing pain, numbness, tingling, burning sensations, and muscle weakness. Within six months of neck surgery I regained strength and related symptoms were much reduced. But now exercise and physical activity have been difficult if not impossible. My wife grabbed my biceps one day and even mentioned that I need to lift weights! Oh the nerve. :)

After these CT scan results, my neurologist conducted electromyography (EMG) and nerve conduction tests to try to get a better picture of what is happening. These “fun” tests are really not all that uncomfortable. The nerve conduction study involves hooking electrodes onto the fingers and then touching another electrode at various places sending an electrical shock to test the nerves. During the EMG, a small needle is placed in a muscle, the doctor asks you to contract the muscle, and then a measurement is taken on an oscilloscope. You can also hear the measurement amplified on a speaker as a series of crackling sounds. As the neurologist conducted the test starting with the forearm then up the arm, shoulders, and finally the neck, the sounds changed and became less regular. At this point the doctor mentioned that the muscles were damaged and not functioning properly. He called for an MRI on my neck and chest area which will be done this week. He believes that the symptoms are either related to a physical issue in the neck joints that were not seen on the CT scan or due to inflammation of nerves from my rheumatoid arthritis.

The neurologist listed six diagnoses on my chart including cervical degenerative joint disease, pain of upper extremity, disturbance of skin sensation, muscle pain, myalgia and myositis, and muscular weakness. This was the most number of diagnoses listed for any ordered test I’ve experienced! Myalgia and myositis were new terms to me. Myalgia simply means muscle pain. Myositis refers to inflammation of muscle tissue and can be caused by injury, infection, or autoimmune disease. I hope the MRI can shed light on what exactly is happening so treatments can be initiated.

The past few weeks, months for that matter, have been a roller coaster of medical symptoms, treatments, and tests…one right after another. One thing about RA is that there’s never a dull moment and you never know what lies ahead. I just hope that I don’t have to stay as a “100-pound weakling”!

Please consider joining a patient research initiative for arthritis – I joined! Here is a link (AP-flyer FINAL) to an informative poster and below is a press release about the project. Power to the patient!

Andrew

CREAKYJOINTS LAUNCHES “ARTHRITIS POWER™,” THE FIRST EVER PATIENT-LED, PATIENT-CENTERED RESEARCH REGISTRY FOR ARTHRITIS PATIENTS

Forthcoming proprietary mobile app will securely collect data to inform clinical trials and allow patients to track, access and share personal health information with their health care team.

AR-PoWER5_2UPPER NYACK, NY (May 14, 2015)CreakyJoints, the online, non-profit, patient support community with more than 80,000 members, today announces the launch of Arthritis Power™, the first ever patient-led, patient-generated, patient-centered research registry for arthritis, bone, and inflammatory skin conditions. Focusing on rheumatoid arthritis, psoriasis, psoriatic arthritis as well as numerous other musculoskeletal conditions, the goal of Arthritis Power is to securely collect health data from tens of thousands of arthritis patients to support future research. Arthritis Power includes a steering committee of patients called the Patient Governor Group that identifies research needs for study development and prioritizes research requests from the CreakyJoints patient community around the world. The new initiative is launched in partnership with the University of Alabama at Birmingham. Arthritis Power is supported in part by the Patient Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization created by Congress as part of the Patient Protection and Affordable Care Act of 2010. Its overall goal is to enhance informed health care decision making and to improve health care delivery.

Usually patients with rheumatoid, psoriatic arthritis or other chronic conditions learn about opportunities to participate in research from their health care providers. Arthritis Power will offer a variety of clinical trial and other research opportunities, allowing patients to proactively decide when and how to participate. Securely donated data will be used by patients, universities, research facilities, and physicians to better understand how to fight these diseases and perhaps, contribute to finding elusive cures. Arthritis Power data will be collected using a smart phone, laptop, desktop or tablet where there is an internet connection.

“Patient-centered research means that we can more effectively use big data to answer questions that are important to those living with these illnesses. This opportunity will produce results that help patients weigh the value of healthcare options according to their personal circumstances, conditions, and preferences,” says Jeffrey Curtis, MD MS MPH, William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology.

“The more people who join and share information about their symptoms and treatments, the more quickly we are able to find answers,” he said.

Putting the Power in Patients’ Hands

Arthritis Power empowers patients to take control of their disease. First, patients positively support and advance the understanding of arthritis by participating in studies shaped by their peers. Second, patients can conveniently and easily track changes in their symptoms over time with their healthcare team via the “My Reports” function of the application. This close-up view of a patient’s day-to-day experience will help doctors work with their patients to adjust medications and promote healthy behaviors.

“With the launch of Arthritis Power, we now have the ability to prioritize our community’s most urgent treatment and disease management questions,” said Seth Ginsberg, President and Co-Founder of CreakyJoints and the Global Healthy Living Foundation. “It will be easy to track, share, and send health data, enabling patients and physicians to have more productive and meaningful dialogue about ongoing treatments.”

CreakyJoints, part of the not-for-profit Global Healthy Living Foundation, is a dynamic education, support, advocacy and patient-centered research organization for people with all forms of arthritis and rheumatic disease. Co-founded in 1999 by arthritis patient Seth Ginsberg, CreakyJoints has grown to a community of more than 80,000 patients and their families in all 50 states, Western Europe, South America and Australia. For more information and to become a member (for free), visit www.CreakyJoints.org.

I was quoted in an article from Medical News Today concerning the RA in America Study conducted by Health Union. Below is the complete news release. 

In a new national survey of rheumatoid arthritis (RA) patients conducted by Health Union, researchers found a severe impact on quality of life, employment, and ability to afford treatment. Rheumatoid arthritis is an autoimmune condition that attacks the body, resulting in joint inflammation, pain, stiffness, and swelling. It may also cause harm to other organs. About 1.3 million Americans or about one percent of the global population have RA.

The results of the survey were that ninety-four percent of respondents with RA said they cannot do as much as they were able before acquiring the disease. Additionally, 67% said others do not understand the severity of their symptoms. The top life-altering symptoms include pain, fatigue, and physical limitations.

“Many people do not know rheumatoid arthritis is a progressive, autoimmune disease and not the result of aging and wear on the body, like osteoarthritis the most common form of arthritis,” said Andrew Lumpe, PhD, a patient with RA and a regular contributor to RheumatoidArthritis.net. “Treatment can help slow the damage, but rheumatoid arthritis frequently alters the lives of both patients and their families.”

Only 37 percent of survey respondents reported they are working full time. Seventy-eight percent of RA patients working full time said their work has been affected by the illness, with the top concerns being:

  • fatigue (92%),

  • pain (84%), and

  • physical limitations (50%).

These were also the same top three reasons used for individuals with RA cutting back on work hours or having to stop working altogether.

Respondents also reported needing help with daily life activities, such as cleaning (75%) and other household duties (52%). Additionally, 41% reported having a caregiver actively involved in managing their RA, typically a spouse.

The good news is that new treatments offer hope for improved quality of life. About half the RA survey respondents reported satisfaction with their treatments and only 21% were dissatisfied. Those on biologics, a newer type of medication, have a slightly higher satisfaction rate. Most treatments were rated with above average efficacy and are generally tolerated by the respondents. Of those respondents who have had their RA go into remission, 74% report remission occurring after treatment with medication.

Unfortunately, 38% of respondents have avoided medications because of cost. Additionally, 30% have spent at least $2,000 on RA treatments during the last year. There are manufacturer-sponsored financial assistance programs for medication (of which 41% of respondents participate). The majority of participants (87%) report being satisfied; however, the primary reason for non-participation in these programs is lack of awareness.

“The affordability of effective rheumatoid arthritis treatments is a serious concern,” said Mariah Leach, an RA patient and contributor to RheumatoidArthritis.net. “When you consider the burden this disease places on patients in terms of quality of life and employment, it is clear that supporting these individuals with treatment options can yield many benefits.”

“Surveys like RA In America can help us better understand the challenges and how to meet the needs of people living with serious chronic conditions,” said Tim Armand president and co-founder of Health Union. “Health care providers and caregivers can adjust treatment and supports with a more vivid picture of the patient experience.”

 The RA In America survey was conducted online in the fall of 2014 with 3,561 respondents who were diagnosed with rheumatoid arthritis and a resident of the U.S. or U.S. citizen living abroad. More details about the survey are available on request.

 Results from the survey can be viewed here.

After the latest ordeal of the past week, the weekend was pretty low key although I was still fighting bad headaches, dizziness, and general malaise. On Monday afternoon, a nurse from the hospital’s emergency department called to say that after four days, the spinal fluid culture came back positive for a bacteria called Streptococcus viridans. They wanted me to come back to the ER immediately. Upon arrival, an IV dose of the antibiotic Ceftriaxone was given along with 1000ml of saline. The doctor came in and said that they were admitting me to the hospital for meningitis which is a general term for an infection of the cerebral spinal fluid and tissues around the brain and spinal cord. This can be a very serious disease and this was the reason for admission. An infectious disease doctor came by to discuss my case. He indicated that this strep bacteria is commonly found on the skin, mouth, and nose and is rarely found in meningitis. He suspected that the original lumbar puncture of the myelogram from the previous week introduced the bacteria into the spinal fluid. While the number of bacteria found in the culture was low, the fact that I’m immunocompromised from taking Rituxan for RA caused the doctors to take an aggressive approach. The infectious disease doctor prescribed a course of IV treatment with the antibiotic Ceftriaxone. This began while in the hospital and requires two doses every 12 hours for 10 days. Fortunately, the IV infusion only takes 10-15 minutes. It was decided that I could be discharged after one sleepless night in the hospital (hospitals are not places to get a good night’s rest). But I would need to continue the IV antibiotics for the next nine days. IMG_0072Instead of returning to the infusion center twice a day, a peripherally inserted central catheter or PICC line was put in (see picture). This was a rather intense installation process as the catheter is put into a larger vein in your arm and the tube goes all the way to an area close to the heart. It involved a specialist nurse using ultrasound guidance and a sterile field in order to get the tube in the right place. The PICC line allows the patient to self-administer the medicine at home. A local speciality infusion pharmacy handled the prescription and a nurse came to my house with the medicine and supplies and spent over an hour teaching me how to safely administer the antibiotic. After self-injecting RA meds over the years, this process is fairly easy.

So an entire week of my life was devoted to a variety of medical processes and procedures. It all began with an attempt to image potential joint damage in my neck and lower spine and ended up with a serious infection. And it’s not quite over as I have an electromyography(EMG)/nerve conduction test with my neurologist tomorrow afternoon to check on the potential source of my muscle and nerve pain – the original reason for the myelogram. And then an appointment with the infectious disease doctor on June 4th to check progress and hopefully remove the PICC line. Such is life in the RA fast lane!

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