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626px-Michael_Ancher_001I’m currently sitting in an infusion center getting a dose of Actemra. This is a double dose, 640mg, as the single dose did not appear to be working well for me. My rheumatologist decided this action based on several key factors. It’s been a rough couple of months as I’ve experienced an increase in joint pain and swelling, been constantly tired, and lacked energy and motivation. Many of the patients around me in the infusion center are cancer patients who are receiving chemotherapy. As I look around at these folk, it is clear that they have some of the same symptoms.

This recent episode caused me to investigate why I felt so bad and I stumbled upon something called “sickness behavior”. The best way for the general population to understand this feeling is to think about what it’s like while fighting an infection like influenza or pneumonia. In summarizing the source and symptoms of sickness behavior, researchers stated,

“It was subsequently shown that physiological concentrations of proinflammatory cytokines that occur after infection act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue.”[i]

According to researchers at the University of Illinois, it was reiterated that sickness behavior can be brought about by pro-inflammatory cytokines. They stated,

“The behavioral repertoire of humans and animals changes dramatically following infection. Sick individuals have little motivation to eat, are listless, complain of fatigue and malaise, loose interest in social activities and have significant changes in sleep patterns. They display an inability to experience pleasure, have exaggerated responses to pain and fail to concentrate. Proinflammatory cytokines acting in the brain cause sickness behaviors.”[ii]

The same cytokines that are involved in autoimmune diseases like rheumatoid arthritis – TNF alpha, Interleukin-1 (IL-1), and Interleukin-6 (IL-6) – are implicated in sickness behavior.[iii] Increased levels of these cytokines are observed in patients with RA. In one study, sickness behavior was even observed in volunteers who received a typhoid vaccine which increased the levels of IL-6 in the blood.[iv] The same symptoms are observed in patients with diseases that involve the immune system such as AIDS, coronary heart disease, cancer, systemic infections, etc.[v] People might act like such symptoms are “all in your head” but there are biochemical reasons behind these symptoms.

This brings me back to Actemra. It is designed to block the signaling processes of IL-6 which are thought to be overactive in RA patients. If IL-6 can be blocked, then symptoms of RA such as joint destruction can be controlled. In addition, Actemra may assist with reducing fatigue experienced by RA patients.[vi] All of this makes sense in light of the sickness behavior theories discussed above. My rheumatologist once told me that the first sign that a biological treatment was working was a patient experiencing more energy.

Within the first month of receiving Actemra infusions, my energy levels skyrocketed and joint pain was reduced. But that experience was short-lived. I’m hoping that the double dose brings a return of that wonderful feeling. In the meantime, I just feel sick!

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YourLifewithRA Final coversm (1)Your Life with Rheumatoid Arthritis, by Lene Andersen

In today’s digital age, there is an unending list of resources on health and diseases generally, and rheumatoid arthritis specifically. Upon receiving a diagnosis, it’s difficult to know where to begin. Lene Andersen’s new book, Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects, and Pain, provides a thorough and easy to read treatise which addresses many aspects of living with RA. She attempts to get new patients to face reality while tempering that reality with hope. But this book is not just for the newly diagnosed. Veterans to RA will also gain insight, learn new ideas, and be reinvigorated to press forward in their fight with the RA beast.

When battling a chronic disease like RA, it is easy to become confused and discouraged. Through her book, Lene’s attention to detail and positive outlook is encouraging and full of hope. All topics are well researched and referenced. She provides links and connections to support groups. She deftly deals with touchy subjects like pain control, mood, choosing to take complex medications, side effects, and relationships. The writing style is easy to understand but she provides enough technical information to be helpful.

I could think of no one better to write such a book. Lene has faced a lifetime full of dealing with RA and this experience is infused throughout her writing. She is a well respected leader in the online RA community through her work at the HealthCentral.com RA site, the non-profit organization Show Us Your Hands, and her blog called The Seated View. Upon receiving a diagnosis in early 2009, Lene was one of the first people I met at Health Central and I was drawn to her calm, well reasoned, data driven, referenced, and clear responses within that online community. This book represents an extension of that same approach. I only wish that this book was available at the time of my diagnosis. I look forward to reading the next books in the series!

Lene AndersenI asked Lene a series of questions related to the writing of this book. Below are her responses.

1. What initially was the driving force behind the genesis of writing a book about RA?

I meet so many people who’ve had their feet knocked out from under them because of RA and no wonder — it can be a difficult thing to live with. The Your Life with Rheumatologist Arthritis series is a mix of being an RA veteran and my background as a social worker. I’ve had RA (well, juvenile arthritis) since I was four years old, giving me over 40 years of experience in living with the disease and everything that comes with it. I wanted to use that experience to help empower others to take control of their life and make the most out of it. To help people be able to live well with RA.

2. In what areas do you see the biggest need for quality information for patients with RA?

There are so many… I’d love to see more work being done on the systemic impact of RA. If someone gave me a magic wand, though, I’d wave it and create magical funding for much more research on diet and alternative medicine done with scientific rigor. So many people experiment with diet and alternative treatments and we have very little reliable information on the role these can play in managing RA. I believe that both diet and alternative medicine can help at the very least manage symptoms and have used an integrated approach to my care since I was a child. We need reliable scientific evidence to indicate what works and what doesn’t.

3. How has the ever expanding digital world impacted the distribution of information regarding RA including your book?

The Internet and the digital world have had a huge impact on helping people with RA to become educated and empowered. The ready availability of information just a click away is shifting the locus of control from doctors to the person with the disease. This is a very good thing. Technology has also allowed me to publish my book independently, rather than have to persuade a traditional publisher that a book about living well with RA is a good idea. Being an indie author meant that very quickly after the book was finished, we made it available to anyone with an e-reader, smart phone, tablet or computer at a reasonable price.

4. What was the biggest AHA or inspiring moment during the process of writing?

Very early in the writing process, I put together that first paragraph in the foreword where I’m having an imaginary conversation with my RA. In that story, I turned the tables on RA, making it uncomfortable and twitchy while I firmly put it in its place, saying “you may share my life — I will accept that — but you may not control it!” It frames everything that Your Life with Rheumatoid Arthritis stands for.

5. What was the highest hurdle to clear during the process of writing?

The rewrite. I had somehow believed that once I had finished the book, revising it would be a snap. It wasn’t. Somewhere deep in the process, someone told me the general rule seems to be that it’ll take as long to rewrite a book as it took to write it. It made me feel better about how long it was taking. It also made me want to bang my head against a wall.

6. How did you prepare a large manuscript while dealing with physical disabilities that impact your ability to type?

One baby step at a time. Even though I use Dragon NaturallySpeaking (voice recognition software) to write, I still face a limit of how much I can do in a day. That time is shared between my work as Community Leader at HealthCentral.com’s RA site, my personal blog, working with Show Us Your Hands! and managing a chronic illness. It meant I usually dedicated weekends to the book and weekdays for the rest of my commitments. Looking at the book as a whole was too overwhelming, so I parsed it into smaller goals of writing one chapter at a time. Once I was done with one chapter, I moved onto the next without looking at how much I still had to do. There were times where I got derailed into sheer envy when I heard of able-bodied writers hammering out 3000 words a day, but I tried not to focus on that. Instead, I put my head down and took it one (metaphorical) step at a time.

7. What will be the topics for your next books?

For the foreseeable future, I’ll be focusing on writing the next two books in the Your Life with Rheumatoid Arthritis series. Book Two is about adjusting to the many physical changes brought about by an RA diagnosis and Book Three will be about the rest of your life, including working, traveling, family, sex, parenting, etc.

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain is available from Amazon for the Kindle. If you do not have a Kindle you can download a free app for computer, tablet and smartphone here. It is also available for other ebook readers, including Kobo and Nook. A paperback version will be forthcoming in the Spring.

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PIK512x664As I mentioned in an earlier post, it’s oftentimes difficult to validate the barrage of information on the internet about health issues and diseases. There are some trustworthy sites for RA such as the Johns Hopkins University RA site. But much of the information on the internet is designed to provide basic information and not detailed and current scientific and research-based results. I recently found an excellent site that can help fill in these gaps. The Projects in Knowledge program is a continuing education program for doctors that is totally online and freely available to patients and other interested parties. All board certified doctors and other medical practitioners must complete ongoing training to maintain licensure. The Projects in Knowledge provides continuing education for medical practitioners. There are accrediting bodies that oversee these programs thereby maintaining quality, accuracy, and currency. Projects in Knowledge has a specialty devoted solely to RA. The rheumatology section is edited by Dr. Phillip Mease who is a clinician at Swedish Hospital in Seattle and a researcher associated with the University of Washington. Each specialty contains interactive modules, video lectures, readings, and other materials. The content is based on the most current research literature. They also have an iPad app called Rheumatoid Arthritis-A Living Medical Textbook where you can go through each interactive module. Granted, much of the information is highly technical but it can provide an excellent background in RA for those who are interested in learning more. Check it out!

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Several years ago I wrote a post about brain fog caused by the biochemical processes of rheumatoid arthritis. The inflammatory chemicals, including cytokines, produced during an autoimmune response can impact nervous system functioning and cause brain fog – or more accurately, cognitive dysfunction. The best way to describe this for someone who doesn’t have RA is to think about how their brain feels while they have a bad case of influenza.

Lately I’ve been wondering about cognitive dysfunction caused by the vast array of medications used to treat RA. This wondering is grounded in the fact that for the past few months I’ve just not felt sharp in thinking and the timing of that goes along with some changes in medication and dosing. I was also reminded of a colleague years ago who was battling multiple sclerosis, another autoimmune disease, and how the medications he was taking caused changes in his cognitive functioning to the point where he could no longer perform his job effectively resulting in his taking disability leave. At the time I didn’t understand what was going on with him but now I have empathy.

I spent a little time exploring the side effects of various medications used to treat RA and its symptoms. Below is a list of side effects related to brain functioning. This confirms what I hypothesized…these drugs can impact cognitive functioning. I suspect that part of my recent “fogginess” is a combination of the biochemical processes of RA coupled with the side effects of my treatment regimen. Like with any side effect, one must consider the tradeoffs. If I don’t take the RA meds, I’m more prone to permanent tissue damage. If I take the meds, I have to learn to manage the brain fog. I’m done writing this post now as I can’t focus any more attention to complex tasks!

Disease Modifying (DMARDs)

Methotrexate[i]

  • dizziness
  • drowsiness
  • headache
  • confusion

Plaquenil (hydroxycholoroquine)[ii]

  • Blurred vision or eye problems
  • Headache

Arava (lefunomide)[iii]

  • Headache

Imuran (azathioprine)[iv]

  • Lightheadedness or fainting

Biologicals

Enbrel[v]

  • Blurred vision or sudden change in vision
  • Lightheadedness, fainting, seizure, or trouble thinking
  • Depression, or mood or behavior changes
  • Mild headache or dizziness

Humira[vi]

  • Changes in vision or eye pain
  • Headache

Orencia[vii]

  • Dizziness, drowsiness, or lightheadedness.
  • Headache

Rituxan[viii]

  • Changes in vision
  • Confusion
  • Dizziness, lightheadedness, or drowsiness
  • Problems with coordination or speech
  • Anxiety
  • Trouble sleeping

Anti-Inflammatory

Prednisone[ix]

  • Nervousness
  • Trouble sleeping
  • Confusion, depression, or mood changes
  • Seeing or hearing unusual things

Pain Killers

Tramadol[x]

  • Lightheadedness, dizziness, or fainting
  • Severe sleepiness or unusual drowsiness
  • Feeling nervous, anxious, shaky, or unusually happy
  • Feeling of constant movement of self or surroundings
  • Headache
  • Trouble sleeping

Tylenol 3 (with codeine)[xi]

  • Hallucinations or unusual thoughts
  • Lightheadedness
  • Sleepiness

Vicodin (hydrocodone)

  • Drowsiness
  • Feeling faint
  • Dizzy
  • Confused
  • Feeling unhappy or unwell
  • Head pain
  • Nervousness
  • Sluggishness
  • Mood changes
  • Anxious
  • False sense of well-being

Sleep Aides

Ambien (zolpidem)[xii]

  • Lightheadedness
  • Seeing, hearing, or feeling things that are not really there
  • Unusual or disturbing thoughts or behavior
  • Confusion, blurred vision, or problems with balance
  • Dizziness
  • Headache
  • Memory loss

Lunesta (eszopiclone)[xiii]

  • Abnormal thinking and behavior
  • Anxiety, aggressiveness, confusion, depression, or dizziness
  • Headache
  • Memory loss

Elavil (amitriptyline)[xiv]

  • confusion, agitation, hallucinations
  • Changes in vision such as trouble focusing
  • Drowsiness or dizziness
  • Seeing, hearing, or feeling things that are not there

Creative Commons Photo Credit: http://commons.wikimedia.org/wiki/File:50mgtramadolhclakyma.jpg


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Sorry for being gone from this blog in a while but rheumatoid arthritis has a way of causing one to focus energies on life’s necessities like work, family, and trying to get healthy. One thing I’ve learned with a chronic illness like RA is that there is never a dull moment. Some new surprise always lurks around the next bend.

I’ve been battling chronic sinus problems for months. I’ve been on three increasingly stronger antibiotics and other treatments including prednisone, decongestants, etc. All to no avail. I am now scheduled for an endoscopic sinus surgery where an ear, nose, and throat doc (ENT) will clean out my sinuses, increase drainage, and correct a deviated septum. This is not something I look forward to but the potential relief motivates me to go through with it.

Ethmoid sinus infection CT scan

In conversations with both my rheumatologist and ENT doc, they agree that the cause of the chronic sinusitis is a combination of anatomical issues causing a lack of drainage and the immunosuppression of the RA drugs. Both are convinced that things will be better after the “rotor rooter” procedure as my rheumatologist affectionately calls it. She also said that the standard is to keep patients on RA drugs even during such treatments and surgical procedures. She does not want a break in RA treatment as it’s too hard to catch up. She said it’s now rare to pull people off of biological RA treatments unless there’s a serious side effect. Both docs have great hope that things will be better after the procedure.

Sorry for the long absence from the blog but my energies have been elsewhere. I’ll post updates on the upcoming surgery and it’s outcomes.

Photo credit: http://commons.wikimedia.org/wiki/File:Ethmoidinfection.png

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