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Posts Tagged ‘diagnosis’

The American College of Rheumatology (ACR) diagnostic criteria incorporate four main areas – joint involvement, RA related blood tests, general inflammation blood tests, and duration of symptoms.1According the ACR,

Joint involvement refers to any swollen or tender joint on examination, which may be confirmed by imaging evidence of synovitis.”2

Physical examination is the starting point for identifying joint involvement. But confirmation by actually looking inside the joint with imaging techniques remains a critical part of confirmation.The synovium is a sac-like lining around certain joints. It provides nutrients and lubrication for joint soft tissues. During the disease processes involved with RA, the synovium swells and thickens, becoming permeated with inflammatory cells and chemicals. Ultimately, cartilage and bone tissue erodes leading to the classic joint damage associated with RA.3 The synovial fluid can be taken from a joint and analyzed for chemicals and cells associated with RA.4 This can be done via needle biopsy or surgery. During an ankle surgery I had several years ago, the orthopedic surgeon sent a sample of tissue to a laboratory for analysis – the results came back positive for RA related synovitis. Medical imaging procedures can be used in as a noninvasive technique for examining a joint.

Read the rest of the article at http://rheumatoidarthritis.net/living/medical-imaging-diagnosing-ra/

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I’ve been on seven – count them – seven different biologic medicines since being diagnosed with rheumatoid arthritis. I started with several anti-TNF biologics and then moved to several others even bouncing back to try another anti-TNF before eventually trying Rituxan. I’ve self-injected with auto-inject pens, self-injected with needles, and seems like I’ve had every type of infusion possible. This is probably something of a record although similar stories emerge on discussion boards from time to time. With some of the biologics, I would respond for a period of time and then it would stop working. With others, there was never a response. With yet others, there would be some adverse side-effect causing cessation. This is not all to unusual as it is widely know in the rheumatology community that upwards of 30% of RA patients do not positively respond to anti-TNF biologic medicines.

Read the rest at … http://rheumatoidarthritis.net/living/switching-ra-medicines-dont-wait-long-try-many/

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I’m still in the midst of recovering from cervical fusion surgery on May 15 and am currently completing physical therapy. The process seems to be going well, pain and numbness is almost completely gone, and I’m slowly regaining muscle strength. After dealing with it for over 8 months, the neck and associated parts finally feels much better. But RA is never silent and has a way of rearing its ugly head just when you think things are calm. Sure, there is always the ongoing “background noise” of RA – fatigue, joint and muscle pain, finger swelling and pain, joint locking, and the persistent ankle pain after having three surgeries. But now the left hip is begging – no screaming – for attention.

Hip problems became apparent almost two years ago when I began getting steroid injections for trochanteric bursitis from my rheumatologist. Bursae are sac-like structures that are found in some joints and aid in providing friction reduction.[1] I had a bursa removed as part of an ankle surgery. The trochanteric bursa is on the outside of the hip and is commonly involved in RA.[2]

While my neck was healing, the left hip progressively grew worse. Sitting for any length of time was impossible, getting in and out of a chair and car was difficult, sleeping on the left side was not feasible, and the left side was favored while walking. At a recent rheumatology appointment, a fourth cortisone steroid injection was given into the trochanteric bursa. But the injection brought no relief. My rheumatologist referred me to an orthopedic specialist.

The orthopedic surgeon examined x-rays and noted that the space in the ball and socket joint, while somewhat reduced, looked fine. There was no bone erosion perceived. We spent some time discussing my earlier problems with the trochanteric bursa, the multiple steroid injections, and my current symptoms of groin and buttock pain. He then laid me down on my back and began to examine my hip movement through a series of tests. I couldn’t lift my leg off the table and extreme pain was felt when he manipulated it in various ways. After the physical exam his entire line of inquiry changed from the more external trochanteric bursa to focusing on tissues around the joint itself. He immediately began to suspect a labral tear. The labrum is cartilage that surrounds the hip joint.[3] But a physical exam and x-ray cannot directly pinpoint what’s really going on so an MRI is needed. A traditional MRI can’t always detect soft tissue in the complex hip joint so an arthrogram is added. Before the MRI, a radiologist injects a combination of fluid, steroid, and a contrast into the hip joint under the guidance of an x-ray. After the injection, you go directly to the MRI machine. The steroid can also provide a therapeutic purpose in reducing inflammation and pain. I am scheduled for an MR arthrogram tomorrow and hopefully it will help solve the mystery.

In addition to the more traditional bone erosion, I have a history of developing soft tissue damage to the musculoskeletal system from RA. This episode with the hip seems to be following that story.

[1] http://orthoinfo.aaos.org/topic.cfm?topic=a00409

[2] https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Tendinitis_and_Bursitis/

[3] http://www.hss.edu/condition-list_labral-tears-hip.asp#.U_zH9WRDvA4

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A recent article in the online publication for doctors called Rheumatology Network calls into question the commonly used outcome measures used in RA. The article, titled RA Outcome Measures Made Simple (or Not?), makes the argument that simpler measures of RA activity are needed.

Over the years, numerous measurement tools have been developed to help doctors determine extent of disease activity. These measures include the HAQ, DAS 28, CDAI, ACR 20, and RAPID 3 among others. These survey-type tools usually focus on joint activity, swelling, pain levels, disability. Some, like the DAS 28 (28 refers to 28 joints – the number of RA affected joints), include blood tests in the assessment. An online DAS 28 tool is available for doctors and patients. If you are a RA patient, your rheumatologist may have used one or more of these tools for diagnosis and to monitor treatment effectiveness. These tools are also used for drug development and testing.

Over the years, these measurement tools have been the target of much research in terms of validation and correlation with the disease (e.g. Radner, et al, 2014). Because they have been shown to provide a modicum of usefulness, they remain in vogue by the rheumatology community. However, in spite of their usefulness and relationship with RA disease components, the ability of these surveys to accurately and completely paint a picture of the disease remains in question. A recent study by Cheung et al (2013) demonstrated that doctors and patients sometimes agree, and sometimes disagree on some of these measures. Sometimes doctors and patients completely disagree (see Castrejón, et al, 2014). In a research paper that I helped present at the American College of Rheumatology conference last year, it was found that the commonly used HAQ tool did not always adequately capture disease impact and activity in patients.

When it comes to subjective measures like impacted joints and bodily function, it’s oftentimes difficult to develop tools that measure variables with 100% accuracy. One would like to think that measurements of biological chemicals involved in disease processes would be more accurate, But that is not always the case and they are also difficult to develop with 100% accuracy (see this article). The bottom line is that researchers need to continue to work on developing useful and accurate measures for RA disease activity. Only then can diagnosis and treatment options be maximized.

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laptop and stethoscopeMy first systemic autoimmune symptom was in 2004 – I was not formally referred to a rheumatologist. Three years later I had ankle surgeries in both ankles which later was attributed to RA. Again, I was not referred to a rheumatologist. In late 2008 I started having additional symptoms that drove me to my primary care physician. He put all the symptom pieces together and immediately sent me to a rheumatologist resulting in a formal diagnosis five years after the first symptoms appeared. After diagnosis, I progressed rather quickly through a series of treatments (that journey continues today but that’s a story for another post). Now I am nowhere near clinical remission and have a severe level of disease activity that caused permanent joint damage and is dramatically impacting my life. I only wish I knew more about RA back in 2004. The good news is that there are some quality resources available that are designed to encourage early diagnosis and aggressive treatment.

One such resource is an online presentation from Dr. Martin Jan Bergman, a rheumatologist from Drexel University. He recently gave an excellent, relatively short, and non-technical presentation in October 2012 titled Rheumatoid Arthritis: Diagnosis, Treatment and Monitoring. The presentation was sponsored by Quest Diagnostics. His presentation is a superb resource for primary care physicians, RA patients, and care givers to better understand the disease and treatment processes.

One key point made by Dr. Bergman is that RA is more serious than most people think and there is a lack of public awareness of this severity. He points out that RA leads to disability, reduced work capacity, and lower quality of life. He strongly asserts that RA is a lethal disease and he shows how the survival rates of patients with high RA disease activity is similar to coronary artery disease and Hodgkin’s lymphoma. RA also brings about an increased risk of heart attacks, strokes, infection, and lymphoma.

Dr. Bergman is emphatic about early and aggressive diagnosis and treatment of RA. His says that his most common referrers are orthopedic surgeons but argues that this is often too late and primary care providers need to be more aware of RA symptoms. He stated that “there’s no such thing as arthritis- it’s a field of study.” He compares the loose use of the term arthritis to getting a diagnosis of a “belly problem” for a heart attack. With over 100 kinds of arthritis, keying in on the exact nature of the symptoms and diagnostic keys is critical to helping the patient. He discusses common diagnostic tests but warns that lab tests are normal in 35% of patients with RA. Common inflammatory tests like ESR and CRP are also normal 40% of time and should never be used to exclude a diagnosis.

Once diagnosed with RA, Dr. Bergman states that it should be treated aggressively. Waiting only results in permanent loss of function and poorer responses to treatment over time. He describes how the ACR/EULAR classification criteria should be used and he states that monitoring the disease using detailed criteria rather than just asking patients how they’re feeling provides a quicker response to treatments. His goal is to get patients as close to “normal” as possible.

Awareness of these issues discussed by Dr. Bergman is critically important for patients’ well-being. I only hope that more physicians will diagnose early, treat aggressively, and monitor carefully. Patients and care givers will find Dr. Bergman’s presentation enlightening.

Creative Commons Photo Credit: http://www.flickr.com/photos/67272961@N03/6123892769/

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20121205-061120.jpgI received an official rheumatoid arthritis diagnosis almost four years ago. In that period of time I went through multiple treatment schemes (see the My Meds page) including four biologicals (Enbrel, Cimzia, Humira, and Orencia) and three DMARD chemicals (sulphsalazine, methotrexate, and Arava) in addition to numerous NSAIDS and the obligatory prednisone. As mentioned in blog posts over the past couple of months, it became increasingly apparent that the combination of Orencia and Arava was just not working. Sticking my head in the sand and ignoring the signs could only last so long while my wife and doctor tried to convince me that it was time to try something else. The evidence was becoming overwhelming…unrelenting fatigue beyond comprehension, increase in the number and intensity of swollen and tender joints, new joints including one shoulder and both hips presenting with signs of attack by RA, missed work, and a level of brain fog never experienced before. In addition, it felt like the monthly Orencia infusions might just as well have been plain saline solution as there was no improvement afterwards. On top of that, Arava was wrecking havoc on my digestive system and the bathroom and I became quite friendly.

While driving into the doctor’s office today, the inevitable started sinking in and I got nervous wondering what would happen. Most of this anxiety is probably grounded in the fact that I’ve been through a slew of treatments and I was feeling like options were beginning to run out. After an exam and conversation about symptoms, my rheumatologist emphatically stated that it’s time to change treatment. She continually expresses hope that we can find a medicine combination that will work for me. She got out a piece of paper and made two lists. The one on the left was for DMARDS that I haven’t tried yet and she wrote down Imuran and Cellcept. On the right she listed biologicals that I haven’t tried and she listed Remicade, Rituxin, and Actemra. In the middle she listed the newly approved oral biological Xeljanz which she dismissed as a possibility for now stating that she wanted to see more long-term data on efficacy and safety before widely using it. She recommended Imuran since it’s been around longer and has better efficacy data for treating RA. Imuran is an immunosuppressant commonly used to help organ transplant patients avoid tissue rejection. It is also used to treat many autoimmune diseases including RA, lupus, and MS. Since three TNF blockers didn’t seem to work well for me, she argued against Remicade but said that we’d keep that option on the list just in case we want to try it later. She said that Rituxan helps some of her RA patients but not as many as she would like. Actemra is the newest antibody biological for RA approved in the United States and she said that she’s seen it help some of her patients. It’s different from the TNF blockers and Orencia in that it targets interleukin 6 which is part of the autoimmune processes linked to RA. So we landed on the Imuran/Actemra combination and await insurance approval to begin the infusions. A trip to the lab for blood tests to establish baselines were ordered. In the meantime, doses of prednisone are prescribed to knock down inflammation.

Changing treatments brings about many questions but also hope that maybe it will provide some relief. Because relief would be a good thing right now!

Creative Commons photo credit: http://www.flickr.com/photos/busy-pochi/5170100206/

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I’ve been absent from this blog for almost 1 ½ years, I decided to jump back and start writing again. And much has transpired since the last post. After stringing it out as long as possible, I had my third ankle surgery in late November 2011. The orthopedic surgeon cleaned up bone erosion on the top side of the heel bone, removed a bone spur poking into my Achilles tendon, removed a bursa sac, and repaired mores tears in the Achilles tendon. Tissues samples were sent to pathology and the lab results noted bone erosion and inflammation caused by rheumatoid arthritis.

Stopping Humira injections in early November 2011 was necessitated by the pending ankle surgery but also by the fact that it just wasn’t helping that much anymore. In addition, a 3 cm swollen lymph node in my armpit needed to be checked out. Short story – saw a great oncologist and after many blood tests, an ultrasound, and a CT scan with iodine contrast, everything came back negative with no lymphoma! One interesting blood test result was that I had a positive Rheumatoid Factor test for the first time. I was finally seropositive and felt like I was no longer the seronegative stepchild of RA. Although I know that upwards of 30% of folk don’t have positive RA blood tests.

I was started on Orcenia infusions in January 2012. I was done with TNF blockers after using Enbrel, Cimzia, and Humira. After insurance approval, I had three loading doses every two weeks before moving to a regular schedule of once a month. Having a nurse administered infusion at a clinic was a new experience compared to self-injections of Enbrel and Humira. It was a rough few months but I began to get back some energy and have less joint pain and stiffness.

By this point, I decided to pursue a new rheumatologist. I had been with my original rheumatologist from the beginning and he made the initial diagnosis. But over time I began to realize that it was time for a change. I sought out a new rheumy by asking around, checking out published lists of top doctors in the region, and looking at patient reviews online. A choice was made and an appointment with a new rheumy scheduled. As an added advantage, her clinic just relocated to a brand new, clean, and cheery building. I had all medical records sent to her.

The first appointment was a pleasant experience from the beginning with smiling staff, caring nurses, and the fact that I didn’t have to wait. The first thing the doctor told me was that she spent considerable time reading all of my medical records. That was a refreshing to know – she already had an idea about my case before I arrived. She then asked me to tell my story in my own words. Given my history, my new rheumy suspects that I may have a combination of RA and ankylosing spondylitis – an autoimmune condition which commonly affects ankles, hips, and backs. She joked that I would be a good subject for genetic testing! We discussed how Orencia was working and she felt like I would benefit from the addition of a disease modifying drug (DMARD). Since methotrexate and I didn’t have a good relationship a few years ago, she wanted to try leflunomide (Arava). In fact, she suspects that one reason that TNF blockers stopped working was that I wasn’t on combination therapy resulting in the building up of antibodies to Enbrel and Humira. I appreciated her optimism about being able to help and compassion about my experiences.

New adventures lie ahead with a new doctor, new medicines, and new possible side effects. But hope springs eternal just like the sun finally coming out in Seattle.

Photo taken by my daughter on a sunny day in Puget Sound.

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