Paying the Price for Activity

The last four days have been a grand time of celebrating our oldest son’s college graduation. It’s been a whirlwind of events including his senior engineering project presentation, three formal ceremonies of various sizes and durations, dinners, and a large party hosted at our house. This meant much physical activity around the yard and house the principal of which was 10 hours of smoking five large pork shoulders for 50 people (it was tasty and you should check out the website http://www.amazingribs.com/).

Going into this set of events, a nagging thought persisted…”I’m going to pay for this later.” Sure enough, by Sunday evening I could barely walk, my fingers were swollen and throbbing in pain, and sheer exhaustion washed over my body causing me to collapse. I knew that going to work Monday morning would not be possible.

Many argue that movement and exercise is critical medicine for arthritic joints stating that it relieves pain and stiffness (see these websites – Mayo Clinic, NCHPAD). In addition to potential positive impact on joints and muscles, exercise is obviously important for other reasons include cardiovascular and mental health. But my experience over the years has been that exercise and movement causes rebound pain and stiffness. Yet, I know that I’m missing out on the benefits of exercise.

It’s interesting to read some of the recommendations from medical websites. From WedMD…“Regular exercise can actually reduce overall pain from rheumatoid arthritis.” In my experience with RA, exercise always causes more pain. There are many times when I’ve had to stop movement because the pain got worse. WebMD also makes this statement, “Regular exercise improves functional ability and lets you do more for yourself.” This may be true for some but the functional ability of my ankles and Achilles tendons actually got worse after exercising. The tendons tore at a quicker rate and my orthopedic surgeon and physical therapist both recommended that I avoid any activity that puts stress on the tendons.

Can exercise actually be contraindicated for RA? Kelly Young at RA Warrior has an excellent series of posts about this topic. She concludes, “If you can, you should; if you can’t, you shouldn’t.” At the Health Central RA website, Dr. Borogini wrote a balanced article about the topic and makes an excellent suggestion which is in alignment with Kelly Young’s statement, “Rest More When RA Is Active, Exercise More When It Is Not.” The Johns Hopkins Arthritis Center website makes a great observation about movement and RA.

“Acutely, resting of involved joints can assist with pain management and decrease the inflammation of the involved joint. However, the potential side effects of inactivity include decrease range of motion, loss of strength, altered joint-loading response, and decrease aerobic capacity.”

This leaves those with active disease in a real quandary.

The conclusion that must be drawn from the recent set of weekend experiences is that my RA is not under control and I should probably avoid strenuous physical activity. But of course, I already knew that going into the weekend. The difficulty lies in the fact that life must go on and I was not about to miss this once-in-a-lifetime celebration. I just have to be ready to pay the consequences afterwards.

Creative Commons Photo Credit: http://commons.wikimedia.org/wiki/File:Tired_brown_bear_050701_01.JPG

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Living within Limitations

Gardening has been a favorite outdoor activity for years. This love of the ground and raising plants began in 6th grade when I dug up a spot in our yard and planted a vegetable garden. Tomatoes grew like weeds and the joy that came with watching and nurturing plants sank deep in my psyche like tap roots.

As a twenty something high school teacher, summers were spent operating a small landscaping business. I had a truck and hired several high school students as laborers. We would plant shrubs and trees, build retaining walls, and haul bulk items like top soil, rock, and mulch. During this phase of life, I also regularly ran 20-30 miles per week and participated in 5Ks periodically. I never felt better!

Every home we lived in over the years would get hours of loving care in terms of landscaping and gardening. Redoing lawns, building greenhouses, planting flowers, edging and mulching planting beds, planting trees and shrubs, and building fences (see photo) were just a part of life.

Thirty years later and living with rheumatoid arthritis has dramatically changed these activities. This fact was recently evident when my wife started edging a planter bed and digging up sod in order to plant new flowers and lay mulch. In the past, I would’ve been in the thick of this kind of work. She began the digging knowing that I couldn’t help. We were delighted when our wonderful neighbor came over and started helping edge and pulling up sod. Instead of just passively standing by watching someone else do the work, I decided to work on bonsai gardening. The kind of work needed to maintain bonsai – pruning, watering, etc. - is doable given the impact of RA on my joints and energy levels. My dwarf Cedar of Lebanon and Western Red Cedar bonsai seem to be doing very well (see photo).

I can no longer dig sod or haul mulch, but I can still get my hands dirty and nurture plants – just on a much smaller scale!

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Up and Down – Doubling Down

I started Actemra infusions in early December 2012. After trying four biological treatments over the past four years – Enbrel, Cimzia, Humira, and Orencia – I tried not to get too cynical about the potential outcome. At the same time Actemra infusions began, my rheumatologist put me on a different DMARD – azathioprine or Imuran. We started at the lowest possible dose of each – 4mg per kg of body weight of Actemra for monthly infusions and 50mg a day for azathioprine. A dramatic impact began about 3 weeks after the first infusion. The change was almost overnight. Within a 24-48 hour period, my energy levels skyrocketed and joint pain diminished. My wife immediately noticed the change for the better. Sleep was more refreshing, the ability to do work increased, stiffness was almost non-existent, and I wasn’t a slug by dinner time. A real treat was the three times I got on our elliptical to exercise for 20 minutes – it had been almost four years since I last exercised!

But as quickly as the amazing results came on, they began to fade away. By the time of the 3rd infusion, I was almost back to the place where I started. Energy levels and lack of joint pain were tracked on a scale of 1-10 and the graph pictorially depicts the results. At the same time this was occurring, we noticed a dramatic increase in cholesterol levels and blood pressure which coincided with the start of Actemra. According to the Actemra prescribing information, increased cholesterol and hypertension are common side effects.

My rheumatologist is a very knowledgeable and compassionate doctor. Her goal is remission and she will try whatever it takes to get there. While driving to an appointment this morning, I began to wonder if I had seen the last of Actemra. The choices are getting slim – really only Rituxin and the newly approved Xeljanz. But she said that I was on the lowest dose of both Actemra and azathioprine. So, we’re doubling down on both in an effort to recapture those golden moments experienced in January. We’ll try 100mg of azathioprine daily and 8mg per kg of body weight of Actemra infusions monthly. Of course we’ll continue monitoring cholesterol and blood pressure. I’ll keep plotting the results and see the outcome of this latest experiment.

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Unplanned Costs of RA

While sitting in the infusion clinic a few days ago receiving my first dose of Actemra (see photo), I began to wonder about the extra costs of having RA that aren’t covered by insurance or planned for in my budget. This thought came to mind as I pulled a parking ticket out of my pocket and wondered how much I was spending on parking per year. Then the thought expanded to all RA related costs that aren’t included in insurance coverage and I decided to make an accounting of these costs.

Parking - Parking charge for clinic, $6.00 per trip to clinic for doctor visits and infusions x 22 trips = $132

Mileage – Driving to clinic for doctor visits and infusions, 22 trips x 30 miles round trip = 660 miles/24 miles per gallon = 27.5 gallons x $3.50 per gallon = $96.25

Co-pays – I have a maximum out of pocket of $2,500 annually and this was fully met the past few years due to the costs of office visits to expensive specialists, imaging including MRIs, RA related surgeries, expensive medications, etc.

Office Visit Co-pays - For my insurance, each office visit is covered except for a $15 copay that I pay at the appointment. 10 visits x $15 = $150

Prescription Co-pays - Most of my prescriptions have a $5-$15 copay. It helps when I can get a 90 day supply but that doesn’t always work. 15 refills per year x $10 average = $150

Missed work – Fortunately I am salaried and can flex my schedule as needed. But the work still must get done. Many RA patients are hourly employees and missed work may mean missed pay.

Over the counter drugs – Tylenol, Prilosec, vitamins, etc. estimated $250 per year.

Medical Supplies/Assistive Devices - Bandages for post surgery, ice packs, crutches, canes, jar openers, etc. estimated $200

This is a grand total of $3,478.25 for the year that comes out of my own pocket. Granted, that does not compare to the total cost of treatment for the year that can run upwards of $40,000 depending on medications, imaging, and surgeries. But it’s still a lot of money that could be used for other things like a new car, a vacation, clothes for my kids, house repairs, savings, etc. People with chronic illnesses must find a way to live with these added expenses. Rheumatoid arthritis is costly in so many ways.

On a side note, it’s been 6 days since my first Actemra infusion and there have been no noticeable effects yet. My joints probably feel the worst they ever have, my fingers feel swollen and frozen most of the day, and energy levels are quite low. But I hold out hope as it could be several weeks before I notice an impact.

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Sometimes With RA You Have to Push Through and Pay Later

It’s that time of year when holidays are celebrated including American Thanksgiving and Christmas. It’s my favorite time of year given all the sights, sounds, smells, foods, and time with family and friends. Our house serves as a gathering spot for many college students and other young adults. Because of this, the hustle and bustle of the season takes over for many weeks. I don’t want to be a Scrooge but the symptoms of RA are getting in the way.

We recently had 16 people at our house for Thanksgiving. That required a full day of food and house preparation. I got up early in the morning to smoke a turkey because one in the oven would not be enough. I served as a host all day and even took a nap during the day. By that evening I was fatigued beyond comprehension and every joint was screaming loudly. I went to bed but was up by 2:00 a.m. with a raging migraine that had me vomiting by 6:00 a.m. and taking Vicodin by 10:00 a.m. The rest of the day was a waste as I lay around trying to keep the headache at bay. I definitely paid the price.

By Sunday afternoon I was feeling better and proceeded to go outside on a rare sunny day in Seattle to put up Christmas lights. This has become an annual family event and I was not about to miss it. I got the ladders out and proceeded to climb on the roof to hang lights. Suffice it to say that a person who’s had three ankle surgeries should probably not walk around on ladders or a roof. But I was bound and determined to participate in this annual event. By nightfall the house looked wonderful as I waddled into the house to rest…which meant collapsing in a chair with an ice pack on my hip and not getting up for several hours. By the time I got up to get ready for bed, my ankles, knees, and hips screamed loudly in protest and I could barely get up the stairs. Even after two cortisone shots in the left trochanteric bursa over the past couple of months, the pain and swelling continue to cause so much pain that walking, sleeping, and sitting are difficult. This will be a point of conversation with my rheumatologist next week and we’ll see where that leads.

The bottom line, I refuse to let RA dictate my life. But I have to be ready to pay the price!

Creative Commons Photo Credit: http://commons.wikimedia.org/wiki/File:Christmas_lights_-_1.jpg

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RA Feels Like Having Weights Strapped to My Body

Having RA brings about many different feelings, reactions, emotions, etc. Lately, in the middle of a particularly nasty flare, it’s become increasingly harder to get going and move around. The best analogy that comes to mind is of a deep-sea diver with lots of weight attached to your body. I’ve never dived before but can imagine that all that weight, the added water pressure of being deep undersea, breathing limited by the special gas mixtures, and the movement slowed by water makes one move incredibly slow.

Waking up in the morning may take 2-3 hours. Often times I will wake up at 5-6 a.m., stumble downstairs in the dark, take my daily prescribed pills, grab something to eat, then find myself on the coach wrapped up in a blanket and falling back to sleep until 8 or 9. Once getting up to really start the day, things move pretty slow. My head feels groggy from poor quality sleep and maybe even from side effects of various medications. Everything takes a little extra time while the joints loosen up. Forcing oneself to get going is a daily struggle. Sometimes inertia gains the upper hand and as Isaac Newton said, “a body at rest remains at rest”. Getting 6-8 hours of productive time represents a good day. Pushing beyond that, which is tempting with a type A personality, only results in feeling worse.

At least today offers an opportunity to work from home and slow down a little bit. But I’m tempted to dive in full bore and seek all of the “adventures” that lie before me. But I must pull back and move slowly with all of the “weight” attached.

Creative Commons Photo Credit: http://www.flickr.com/photos/usnavyseabeemuseum/6847212397/

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A Twinge of Pain from RA

 Definition of TWINGE

transitive verb

1 dialect : pluck, tweak

2: to affect with a sharp pain or pang[i]

A typical day with RA includes gentle reminders such as stiff and tender fingers while typing, difficulty getting up out of a chair if sitting more than 30 minutes, a knee that pops loudly while flexing, elbows that ache, and then there’s the ubiquitous fight with fatigue. After three ankle surgeries on torn Achilles tendons, tendon insertion tears, and bone erosion in the heel, these areas are omnipresent reminders of RA. Most days it’s tolerable and doesn’t impact walking – although strenuous exercise is out of the question. But every once in a while when going up or down stairs a sharp pain comes out of nowhere to scream a very loud reminder. This twinge catches me by surprise. Many times the pain is so bad that I must stop on the stairs and change the way I walk. Many have seen me limp away from the stairs. The sharp pain usually lasts for a few hours before subsiding. Once the major pain is gone, I usually forget it and move on. But the little voice in my head always asks if there is more RA-induced damage that will result in another surgical procedure someday. Ignoring that voice is helpful as there’s nothing to do about it now.

Recovery from sinus surgery seems to be going well. It’s been 10 days and the bleeding is almost gone, breathing is better, headaches are less intense, and energy levels are slowly returning yet with peaks and valleys. The best news is that today was the last dose of the antibiotic Cephalexin. This is the last of four antibiotics taken over the past 3 months. These strong antibiotics impact the GI system in very uncomfortable ways which won’t be missed. Arava will be added back to the RA treatment regimen tomorrow. Of course, Arava brings its own set of GI side effects which aren’t too bad at the 10mg per day level. The next Orencia infusion is Tuesday and I’m glad that I didn’t have to miss a dose during this entire sinus situation. Hopefully sinus infections will be a thing of the past.

Early next week I plan to write a post about the role of cell death in rheumatoid arthritis, genetic links, possible treatments, and how this is connected to cancer. Have a good weekend!

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[i] http://www.merriam-webster.com/dictionary/twinge

Creative Commons Photo Credit: http://www.flickr.com/photos/atoach/1919798630/

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Seronegative RA

Image by pollyalida via Flickr

Things are pretty hectic these days and that typically brings an increase in fatigue and joint symptoms. It doesn’t help that my Humira injection is due tomorrow but I’m itching to take it today with the notion that it may help me feel better. Of course, today I read of a study demonstrating that stress increases the release of inflammatory proteins like TNF alpha.[i] But I was more intrigued by the Arthritis Foundation article about how long it takes for rheumatic diseases to be diagnosed.[ii] Average time to diagnosis varies (see table below) but it is clear that folks with these diseases suffer for a long time before getting proper treatments. The article states, “Many rheumatic diseases have symptoms that overlap, and blood tests are rarely conclusive.”

Rheumatoid arthritis 6 to 9 months Juvenile arthritis             5 months Fibromyalgia                    2 to 5 years Sjögren’s syndrome         3 to 7 years Ankylosing spondylitis    6 to 9 years

Such was the case with me. After being referred by my general practitioner (an internist), my rheumatologist first suspected ankylosing spondylitis since my primary symptoms at the time were uveitis (inflammation of the iris) and achilles tendon problems. But my blood test for HLA-B27, the common genetic marker for this disease, was negative. About the same time, other tell-tale symptoms of RA began appearing…middle finger joints, wrists, elbows, knees – all occurring symmetrically on both sides. Bone erosion was noted via x-rays. Morning stiffness (what’s that? I’m stiff all day long!) and overwhelming fatigue (the truck running over you type) wrapped it up for the rheumy and he diagnosed me with RA.

This diagnosis was made in spite of negative RA factor blood tests. My RA factor tests have always been “borderline”…it’s not a black and white test. Another antibody test, anti-cyclic citrullinated peptide (anti-CCP) is another one used to determine RA. So far, I’ve been negative on that one as well. Therefore, I have what is called “seronegative RA.” I met the criteria using the now outdated diagnostic criteria.[iii] The diagnosis criteria were recently updated[iv] and according this new system, I still meet the diagnostic critieria without having positive blood tests. My rheumy regularly mentions that seronegative RA patients tend to fare better with symptoms over the long run and this is borne out by research.[v] Some seronegative RA patients “convert” over time…they end up with positive tests. Interestingly, a large proportion of folks diagnosed with RA are seronegative…up to 30% in some studies.[vi]

Being seronegative makes me feel somewhat like the stepchild to those who are seropositive. Maybe I’m not “official enough”. But then I have to step back and remember that my symptoms are real, I have permanent joint damage, and I’m forking out upwards of $20,000 a year for biological treatments (well ok, my insurance covers most of it). Perhaps I will seroconvert someday. But in the meantime I’ll hang onto the research that says that us seronegative RA types have a better long term prognosis.

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[i] http://www.arthritistoday.org/news/social-rejection-stress-inflammation080.php

[ii] http://www.arthritistoday.org/daily-living/relationships/you-and-your-doctor/rheumatic-diseases-misdiagnosed.php

[iii] http://www.hopkins-arthritis.org/physician-corner/education/acr/acr.html

[iv] http://www.rheumatology.org/practice/clinical/classification/ra/2010_revised_criteria_classification_ra.pdf

[v] http://www.ncbi.nlm.nih.gov/pubmed/3855618

[vi] http://onlinelibrary.wiley.com/doi/10.1111/j.0105-2896.2009.00856.x/full

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Snap, Crackle, Pop

Image via Wikipedia

Late one evening while watching a movie with the family, I was relaxing in my favorite chair (Dad’s chair). Staying in one position for long is not possible as my joints become stiff and uncomfortable. Constant shifting, stretching, rising up and walking around are needed to avoid the stiffness. My right leg was propped up under the other leg. After 10 or so minutes the urge to stretch the leg out hit me. I flexed the knee and midway through the motion, the joint got stuck. This situation happened in the past but habit kicks in and the urge to continue the flexing motion to relieve the stiffness caused me to push through the catch. A loud pop ensued followed by pain. Even though the surround sound from the movie was loud, the pop was heard by all which was followed by a moan of pain.

I know that my right knee has permanent damage from RA. Last year an MRI ordered by my rheumy confirmed that the articular cartilage, the cartilage on the tip of the leg bones that keeps friction between the bones to a minimum, was eroded to the point where pieces of the soft tissue were frayed and likely floating around in the joint. There are probably places where rough surfaces of the bone are in contact with one another. The loud pop was probably from a piece of frayed cartilage catching on something during the flexing motion. This explains the nearly constant pain that racks my right knee.

One of the most embarrassing moments I’ve experienced in the past couple of years is when I flex my knee in the middle of a meeting during a silent moment and everyone hears it pop loudly. I just smile and act like it’s no big deal. Every time I readjust my leg while in bed, it pops loudly. While certainly the worst offending joint, my knee isn’t the only one that snaps, crackles, and pops. My finger joints regular crunch as I move them. If moved slowly, I can literally feel the tissues moving and grating on one another. My ankles pop constantly. This phenomenon is known as crepitus which is Latin for crackling.[i] There are multiple forms, but articular crepitus, which occurs at the tips of bones, is a common symptom of RA.[ii] As the joint is attacked by inflammation, tissues are degenerated resulting in soft tissue destruction and bone damage.

For me, the crepitus comes and goes depending on the level of inflammation. But this symptom demonstrates that joints are already damaged. Only time will tell how long my right knee will hold out before more drastic measures are needed (I refuse to let my mind go there). For now, the snap, crackle, pop of my joints serve as an audible reminder of RA.

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[i] http://www.medterms.com/script/main/art.asp?articlekey=12061

[ii] Ombrest, L., Bisschop, P., & Veer, H. (2003). A System of Orthopaedic Medicine. London, Elsevier.

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RA Pain – Types, Causes, and Treatments

I’m at a loss about how to describe the various types of pain I’ve experienced with RA. As I prepare this post, all of my PIP finger joints (middle joint) are swollen and tender to the touch. The DIP joint (tip) on my left pinky smarts. The MCP joint (base of finger) on my left middle finger lets me know when I grab the steering wheel. Both wrists hurt when I flex them. My right elbow displays a sharp pain right above the joint. Both knees ache and crunch when moved. My calf muscles feel stretchy and stiff. Both Achilles tendons sting…the right one is bad enough that it was difficult to drive home from work today. The sides of my feet hurt when I press on them. While this day may not typical, one thing is certain…some sort of pain is always present with RA.

Sometimes I find it hard to pinpoint the source or cause of the pain. Yet my analytical mind wants to understand the underlying reasons. Perhaps knowledge can lead to pursuit of the right treatment. But it’s probably more curiosity than anything since my stomach can’t handle oral NSAIDs, I try to avoid taking inflammation-reducing prednisone as much as possible, and I tend to shun narcotic pain relievers for their side effects.

Pain is the body’s way to telling you something is wrong. According to one source,

“[Pain is] an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. While it is unquestionably a sensation in part or parts of the body, it is always unpleasant and, therefore, an emotional experience.”[i]

Pain can be classified as either acute – short term, or chronic – long term.[ii] While some RA induced pain may be acute, it can come and go depending on what joint is being affected, much of it is chronic. Pain sources can be nociceptive – caused from the stimulation of local nerve receptors, or non-nociceptive – caused by problems with the central nervous system.[iii] RA pain is nociceptive since it tends to be localized to various inflamed or damaged tissues. Nociceptive pain can be further divided into somatic – localized to an area resulting from damage to the musculoskeletal system, and visceral – non localized pain.[iv] With somatic pain,

“Patients may describe this as sharp, aching, and/or throbbing pain that is easily localized.” [v]

Pain associated with RA is typically chronic, nociceptive, and somatic. Management for this type of pain is facilitated through the use of analgesics like acetaminophen (Tylenol), non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, or narcotics.[vi]

Another type of pain caused when the nervous system is damaged, called neuropathic pain, may also be associated with RA. [vii] For example, the tingling sensation associated with carpal tunnel syndrome I’ve experienced lately is caused by pressure on, or damage to the median nerve that enters the hand.

With RA, the first and foremost goal is to treat the cause of the pain – inflammation. In this regard, my thought is, “Humira, do your thing so inflammation and pain is reduced.” If not, I’ll be forced to take more drastic actions such as treating the pain symptoms directly. That’s where my treatment options become less available. I guess I’m left with Tylenol, the hottub, topical Voltaren gel (an NSAID), and rest! If that doesn’t work, perhaps I’ll pull out the prednisone tomorrow. I’d prefer to treat the cause directly and not the pain symptoms. In the meantime, I’ll try “taking” some of those peanut M&Ms my daughter brought home for me from back-to-school shopping!

Photo credit: Creative Commons License http://www.flickr.com/photos/azariusrex/

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[i] American Pain Society. Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain. 5th ed. Glenview, IL: American Pain Society; 2003.

[ii] http://www.texmed.org/Template.aspx?id=1462

[iii] http://www.ehow.com/about_5393798_somatic-pain-vs-visceral-pain.html

[iv] http://www.painbalance.org/nociceptive-pain-overview-1956304245

[v] http://endoflife.northwestern.edu/pain_management/part_one.cfm

[vi] http://www.medterms.com/script/main/art.asp?articlekey=10933

[vii] http://www.painbalance.org/neuropathic-pain-overview-2772791

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