Posts Tagged ‘Rheumatology’

photoI made it back home after a wonderful three days at the American College of Rheumatology conference in San Diego only to have an MRI on my right elbow today (more on that later).

The highlight of day 3 was a research paper that a team presented. The research team was led by Kelly Young from the Rheumatoid Patient Foundation (RPF) (who also blogs at RA Warrior), Dana Symons from RPF (who also blogs at The Water’s Edge), myself, and Cindy Crowson from the Mayo Clinic. I ran the statistics on the data.

The goal of this study was to obtain greater understanding of the nature of RA as experienced by patients. This was done by giving a patient survey that contained some questions related to consequences of performing certain physical tasks and whether a recovery period followed. The survey also contained and some questions directly from the Health Assessment Questionnaire (HAQ) which is a common assessment tool used to gauge disease impact. The hypothesis was that the HAQ fails to adequately gauge the real impact of RA in activity.

Below are some highlights from the findings and discussion.

In addition to the HAQ question: “Are you able to climb up five steps?” survey respondents were asked a corresponding question related to this activity: “If you climb a flight of stairs, will you be able to continue to walk, climb stairs, or move around afterwards just as well as before climbing the stairs?” After climbing stairs, only 17% said they would be able to move normally as others do or as before having RA. 54% would move with SOME increased difficulty because of having climbed the stairs, and 29% said they would have more difficulty each time they continue to do such activities in the same day.

Seventy-eight percent of respondents reported often (51% “always” and 27% “usually”) having a recovery period when they are less able to be physically active after physical activity. The majority reported being unable to do chores such as vacuuming or yard work on the same day as running errands or shopping. People who are more likely to require a recovery period are less likely to engage in multiple activities.

The survey items were statistically deemed to be measuring similar, yet different aspects of impact of the disease on daily activity.

The results of this study suggest an aspect of disease impact on physical functional that is not detected by the HAQ – a common assessment tool used by doctors and researchers during clinical trials of new drugs. Several results of this survey indicate the existence of a “recovery period” after physical activity in people living with RA. The survey data also indicate that patients modify activity to manage consequences rheumatoid disease.

Patient responses on the HAQ may reflect a higher health-related quality-of-life score than patients actually experience due to lifestyle adaptations, the failure of the HAQ to detect consequences of physical activity such as a recovery period, and the failure of the HAQ to consider essential context of activities in real life. Within the context of real life, patients have lower functional capacity after performing tasks described in the HAQ, and may not be able to repeat such tasks with the same level of difficulty. Patients also modify tasks, which may not be detected by HAQ responses. Further investigation is needed to develop ways for patient outcome measures to more accurately assess rheumatoid disease activity.

Here is a link to the entire poster abstract if you are interested in reading – http://rheum4us.org/wp-content/uploads/2013/10/Abstract-Poster-HAQ.pdf.

It was exciting to participate in patient-driven research about RA and the goal is that such efforts will continue to inform clinicians and researchers so that diagnosis and treatment will improve.

As I digest and process information about the conference in general over the next few weeks, I will write blog posts describing what I learned from the conference.


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ACR name badgeWhat a first day at the American College of Rheumatology (ACR) Conference! I heard that there are over 15,000 people here and they are from all over the world. I spent the morning volunteering at the Rheumatoid Patient Foundation (RPF) booth and then attended sessions in the afternoon. I met the wonderful people from the Arthritis National Research Foundation and Arthritis Introspective. The exhibit hall was overwhelming!

If you want to receive regular updates via Twitter, I’m @livingwra.

Here’s a list of topics I plan to write about over the next few weeks as I have time to process information.

  1. Pharma companies spend lots of money at conferences (and give free lattes).
  2. Personalized medicine based on genomics and autoantibody profiles may be in the future.
  3. Biomarkers for various various signaling pathways may help select targeted kinase inhibitors.
  4. Autoimmune antibody markers other than Rheumatoid Factor (RF) and Anti-CCP are being investigated in order to better predict RA.
  5. People with positive RF and Anti-CCP tests tend to have higher levels of inflammatory cytokines.
  6. The lung is being investigated as a possible site of RA initiation.
  7. Systemic inflammation in RA contributes to depression.

More updates tomorrow and details about our paper presentation on Tuesday to follow.

ACR exhibit hall




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Between October 26-29, I will fortunate to be able to attend the annual conference of the The American College of Rheumatology (ACR) in San Diego, California. The conference will be attended by thousands of rheumatologists, researchers, health care providers, patient advocates, and exhibitors. The American College of Rheumatology’s…mission is advancing rheumatology! The organization represents over 8,500 rheumatologists and rheumatology health professionals around the world. The ACR offers its members the support they need to ensure that they are able to continue their innovative work by providing programs of education, research, advocacy , and practice support.” This is THE big conference in the United States related to rheumatology.

I will be serving in two primary capacities while at the conference. I will be volunteering at the exhibit booth for the Rheumatoid Patient Foundation (RPF). The RPF strives to bring advocacy, awareness, and support for patients through a variety of strategies. I will also be co-presenting a research paper with Kelly Young and several others about disease impact on activity. This research was supported by the RPF. After the presentation I’ll share more details about the research findings from the paper on which I conducted some of the statistical analyses. In between volunteering for the RPF in the exhibit hall and co-presenting the paper, I hope to be able to attend research sessions related to diagnostic issues and new treatments in the pipeline. My goal is to post updates on this blog over the next few weeks.

It’s exciting that through the RPF, actual patients have the opportunity engage with health care professionals at their professional conference. Such interaction is critical for advancing research and ensuring the best quality care and treatments.

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Twelfth_century_headache_-_geograph_org_uk_-_456584Monday afternoon was spent receiving a Remicade infusion. No, it was not regularly scheduled infusion- it was moved up two weeks as my rheumatologist increased the frequency to every 4 weeks and increased the dose from 300mg to 500mg. This is due to the fact that the Remicade/methotrexate combination does not seem to be having the desired impact on RA as evidenced by increased joint pain/swelling, fatigue, and continuously high C-reactive protein tests over the past few months. After trying multiple treatment regimens over the past five years, this result does not surprise me and I knew that the adjustment was coming. Given past experience, I also knew that the chance of getting a “killer” headache after the infusion was high.

My rheumatologist has been working with a neurologist to tackle the headaches. The neurologist mentioned that at the basic level, many headaches are caused by some type of inflammation (see this overview) and he suspects that my body is reacting to the medications in a negative way. There is research to support the idea that inflammatory cytokines including tumor necrosis factor (TNF) may be implicated in causing migraines (see this review of research). Furthermore, it is suggested that anti-TNF medications may be beneficial in treating headaches although no data currently exists to support this notion (for example, see Bo, et al, 2009). But in fact, just the opposite seems to be occurring with some patients taking anti-TNF medications like Humira and Remicade. TNF inhibitor medications used in inflammatory autoimmune diseases are associated with causing headaches. Read any medication guide for these class of biological medications and you’ll see that headaches are one of the most commonly listed side effects (for example, see the FDA guide for Remicade).

My neurologist indicated that two ways to treat headaches include abortive – knock it down after it starts, or preventative-stop it from happening in the first place. I keep a small pill box of sumitriptan (Imitrex) handy at all times in case a bad headache sneaks up on me. I also take a very low dose, 10mg daily, of nortriptyline as a preventative. This old class of tricyclic antidepressant is also noted as helping manage pain and many rheumatologists use it for fibromyalgia and RA. But the “big guns” come out at the time that I receive an infusion. Last month I was given an injection of 150mg of solu-medrol (methylprednisolone) corticosteroid as a powerful anti-inflammatory headache preventative. The nurse slowly injects it into the infusion line and I could feel a tingling move up my arm, my heart rate increase, and a blast of energy come out of nowhere. Just for perspective, the first day on a Medrol dose pack (see my last post) is a total of 24mg of methylprednisolone. 150mg is a high dose of steroids coming all at once! Forget getting any sleep that evening as insomnia is a classic side effect. Last month the solu-medrol injection seemed to help prevent Remicade-induced headaches. But within two hours of receiving the 500mg dose of Remicade on Monday, a massive headache bore down and lasted for the next 24 hours (of course, the lack of sleep probably didn’t help). Two days later it still feels like I received a big butt whipping.

Side effects are one of many reasons that RA patients stop taking medications. Uncontrolled and debilitating headaches certainly are causing me to think carefully about what’s going with my treatment regimen. I can still recall a month or so early last spring when I stopped Actermra infusions and was waiting to start Remicade infusions. It was a wonderful time as my mind was clear and I had no headaches. Yet, the RA was not under control. While taking no treatment for a while helped reduce headaches, the alternative of receiving permanent damage and disability from uncontrolled RA sounds even worse. Of course, my RA is not under control right now anyway!

Creative Commons photo credit: http://www.geograph.org.uk/photo/456584

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medrolRA created a desperate situation. Joint pain, stiffness, and swelling are at high levels. You know it’s bad when one can notice swelling in a skinny knee (just ask my wife about my bird legs). My rheumatologist commented the other day, “your hands feel hot today” intimating that inflammation was busy at work. Energy levels are such that simple daily tasks like cooking dinner are difficult. Cognitive functioning is so impaired that tackling issues at work and home are close to impossible (missed work…that’s another issue for another day). Systemic inflammation seems to running rampant – a recent C-reactive protein test was near an all- time high for me at 1.6 mg/dl and it’s been this high for the past four months. Tweaks to long term treatments are yet to show an impact.

It’s hard to believe but I actually asked my rheumatologist for steroids in an effort to knocks things down a notch. If you’ve read this blog over the past few years, you know that I’m not a big fan of corticosteroids (see earlier posts on Prednisone Side Effects, Love/Hate relationship,  and  my first post on the subject where I compared them to Nuclear Weapons). A stash of prednisone pills sits in my bin of prescriptions but it is avoided like the plague as the side effects often feel worse than the RA. My rheumy recommended something different and I agreed to try a Medrol Dose Pack which contains a batch of 4mg methylprednisolone pills titrated down over a period of days (see photo). I only had one experience with this approach back in 2008 when first diagnosed. These dose packs are used to treat a variety of inflammatory conditions (see package insert).

The first day brought a welcome burst of energy, much lower joint pain, an ability to focus, and the recurring headaches disappeared. It felt wonderful. Then it came time to sleep and it was clear that wasn’t going to be easy as my body and mind were both hyped up. An Ambien (zolpidem) sleeping pill was used to help which it did. Day two didn’t bring the same levels of energy and joint relief and I collapsed in a puddle left wondering if it was worth it. The next few days will serve as an experiment to see if rampant inflammation from the RA can be wrestled into submission by this powerful drug. If not, I’ll just have to wait to see if long term treatments will start working. After being through so many treatments over the past few years, my rheumy actually used the term “refractory RA” with me the other day which doesn’t engender much hope. In the meantime, I’ll seek any relief from any front including the corticosteroids I love to hate.

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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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A weird thing happened at my Actemra (tocilizumab) infusion last Friday…I was dog tired and started dozing off in the chair when all of a sudden about half way through the infusion I got a rapid burst of energy. I went home feeling great and even mowed my front yard! But by Saturday night it was all over and I was back to feeling terrible – it was a great tease!

My rheumatologist always states that her goal is for me to not pay much attention to RA throughout the day. If the RA is causing issues to which I must attend during the day, then she believes that the medications aren’t working well. For the past five months since starting Actemra, I can clearly state that RA persistently reminds me that it’s present. I knew in the back of my mind that a change may be needed. But after being through so many RA treatments over the past 4 ½ years, I’m very hesitant to switch medications because I’m getting to the point where choices are limited. Below are some factors that are working towards a change.

  1. Doctor recommendation. I don’t tend raise the issue of switching medicines and instead rely on my rheumatologist to broach the subject. Call me gun shy – I just want to make sure that we give a treatment a fair shot before moving on. Part of that hesitancy is based on the fact that we’re running out of options. After last month’s discussion and a recent set of blood tests a few days ago, my rheumatologist contacted me and wants me to stop the current combination of Actemra infusions and leflunomide (Arava).
  2. Your body. My rheumatologist always asks me how I’m feeling in terms of joint pain, swelling, fatigue. She understands that I know my body better than anyone else and takes that into account. She even asked me yesterday, “Do you think the Actemra is working – if not, I’m fleshing out a super Plan B.” I have to admit that it does not seem to be working well. I’ve had increasing joint pain and swelling with over 28 joints impacted. Using the ubiquitous DAS28 tool for measuring RA disease activity (an online calculator is available), I currently have high disease activity.
  3. Increase in Inflammatory Blood Markers. A sharp increase in inflammatory blood markers may demonstrate that the disease is becoming more active (see this study on the correlation). For the first time ever since being diagnosed with RA, I had a high C Reactive Protein test last week. While blood tests like sedimentation rate and C reactive protein are not always accurate indicators of disease as some RA patients like myself tend to not show high results (see this study), they can serve as some gauge of disease activity and are used for clinical trials (see this post from RA Warrior for more info). If the level of general inflammation in my body is increasing while taking certain medications, it may be a sign that they are not working well.
  4. Side Effects. Many side effects of RA medications are tolerable. But sometimes side effects can have too great of an impact. Such is my case with Actemra as we’ve seen a steady increase in cholesterol, triglycerides, and blood pressure since starting infusions. Roche, the maker of Actemra, lists these side effects in the prescribing information as “Adverse Reactions” seen in at least 5% of the population taking the drug. While these side effects are not listed as “Warnings” which include more acute issues like serious infections and gastrointestinal perforations, my rheumatologist believes that they are serious enough to warrant a switch in medication.
  5. Others Around You. Sometimes we can’t see the “forest for the trees” so to speak and we need others to observe how we are doing. I will tend to put my head in the sand and march on like nothing is wrong. As the British say, “hold a stiff upper lip” or “keep calm and carry on.” I’m fortunate to have a wife who can observe changes over time and call it like it is. She recently questioned the efficacy of the Actemra/Arava combination.

4109461394_1be7f99342All of the information above tends to be pointing towards the fact that Actemra is not working for me and that it’s time to move on. The choices are becoming limited as it appears that Rituxin infusions and the newly approved Xeljanz are the only biological treatments currently on the market that I haven’t yet tried. Rituxan is an entirely different kind of biological which is usually reserved for patients who don’t respond to the more common biological treatments. Xeljanz is brand new and lacks long term efficacy and safety data in the open market.

Last December I wrote a post about how Orencia was not working and the switch over to Actemra. Five short months later I’m at the same place of limbo trying to figure out the next plan of attack.

Creative Commons Photo Credit: http://www.flickr.com/photos/carolyncoles/4109461394/sizes/m/

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