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!

Read Full Post »

Diagnose Early, Treat Aggressively, Monitor Carefully

My 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/

Read Full Post »

Knowing When It’s Time to Switch RA Medications

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.

All 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/

Read Full Post »

Sub-Types of Rheumatoid Arthritis?

My rheumatologist believes that I may have a combination of rheumatoid arthritis (RA) and ankylosing spondylitis (AS). I have had a positive rheumatoid factor (RF) test and I present classic examples of inflammation and damage in joints commonly associated with RA including in the proximal interphalangeal (PIP) and metacarpophalangeal (MCP) joints in both hands. Add to that list, symmetrical joint presentation in the wrists, shoulders, hips, and knees along with fatigue and it seems like RA. At the same time, my rheumatologist noted limited spinal mobility and many problems with my ankles and Achilles’ tendons which are common with AS. My first autoimmune symptom, which occurred years before joint problems, was inflammatory uveitis in both eyes. While Achilles tendon problems and uveitis can be associated with RA, they are more commonly seen in AS patients. But a test for HLA-B27, a common genetic test related to ankylosing spondylitis (AS), was negative. These blood tests are not 100% accurate and the official diagnosis in my chart is RA (diagnosis code 714).

Muddying the water is the fact that I have been through a slew of RA treatments over the past four years in an effort to find a combination that works for the long term. I’m currently on Actemra infusions and now going back to add leflunomide (Arava) in an effort to capture the earlier success with Actemra. While many RA patients find relief from the most common treatments like methotrexate, Enbrel, and Humira, it seems to elude 30-40% of patients.[i] Every person seems to respond differently to various medicines and doses.

This personal evidence leads me to believe that there may be different sub-types of RA. In a recent conversation at the RA site on HealthCentral, the notion of sub-types of RA was mentioned. We already know that there are different types of inflammatory arthritis including RA, AS, psoriatic arthritis.[ii] And each of these diseases presents different patterns and may be treated with similar and/or different medications. But there seems to be a lack of scientifically defined sub-types of RA.

According to researchers from the Netherlands, “Rheumatoid arthritis (RA) is a heterogeneous disease with unknown cause.“[iii] Differences in genetic expressions of RA patients were seen by these researchers lending some credence to a genetic link to sub-types of RA. In an earlier study of the genetics of RA in 1989, researchers found a gene called HLA-DR was found in 83% of 149 patients with classical or definite RA.[iv] But no explanation is given for the 17% of RA patients who did not show the gene. In 2010, a group of researchers found four genetic sub-types of RA.[v] Japanese scientists found genetic differences at the molecular level. They stated, “Data from genome-wide screening, transcriptional profiling, and animal models indicate that RA consists with heterogeneous disease subsets.”[vi] Some researchers even found different emotional responses in RA patients.[vii]

While the causes of RA are not completely evident, most scientists suspect a combination of factors including genetic and environmental (see earlier post on the triggers of RA). Scientists are now beginning to unravel the complexities of RA and find that there may actually be a variety of sub-types of the disease. I hypothesize that future research into RA and other autoimmune diseases will reveal that genetics and environmental factors impact the way individuals present symptoms and respond to treatments. This knowledge may lead to definitions of RA sub-types and better treatments in the future. In the meantime, I’ll keep experimenting with treatments in order to find a combination that works.

---

[i] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2669237/

[ii] http://www.arthritisresearchuk.org/arthritis-information/inflammatory-arthritis-pathway.aspx

[iii] http://www.ncbi.nlm.nih.gov/pubmed/17223656

[iv] http://www.ncbi.nlm.nih.gov/pubmed/2481309

[v] http://www.blackwellpublishing.com/acrmeeting/abstract.asp?MeetingID=774&id=90254

[vi] http://cdn.intechopen.com/pdfs/25397/InTech-Molecular_mechanisms_of_rheumatoid_arthritis_revealed_by_categorizing_subtypes_of_fibroblast_like_synoviocytes.pdf

[vii] http://arthritis-research.com/content/15/2/R45/abstract

Read Full Post »

“You’re Walking Like Frankenstein”

The other day I walked into the kitchen and my wife laughingly said to me, “You’re walking like Frankenstein”. I laughed back because I knew that I was like the “living dead” for many reasons but mostly because of changes in my joints. I have bursitis in both hips which radiates pain down the thigh and in the buttocks (I got two cortisone shots recently and they did nothing – but that’s another story), cartilage damage in both knees, and three surgeries on my ankles. Add to that, I could barely get out of bed and walk around this morning due to sharp pain in the same area of the right ankle that’s had two surgeries. I’ve felt that pain before which was from erosion in the heel bone causing spurs to dig into the Achilles tendon. Yep, I was walking stiffly and probably looked like a monster from a movie.

It’s a natural tendency to make adjustments due to pain or joints that aren’t working as designed. Joint changes from rheumatoid arthritis seem to be inevitable As bone and soft tissues are attacked, damaged, and eroded, the joints can no longer work as they should. Fortunately, disease modifying medications can slow down the damaging biochemical processes. In spite of being on medications, changes are still affecting my movement and activity.

When the term arthritis is mentioned, the first thing that comes to most people’s mind is probably bone damage. With the more common osteoarthritis (OA), there may be damaged cartilage causing bone to rub together. But with rheumatoid arthritis (RA), the immune system attacks the body’s own tissue. The capsule surrounding the joint, called the synovium, becomes enlarged due to an increase of immune cells. Eventually an overproduction of bone eroding cells and enzymes begins to erode bone tissue and soft tissues.[i] The soft tissues that hold the joint together including tendons, ligaments, and cartilage are also damaged.[ii] [iii] When all of these tissues become affected, the entire skeletal structure designed for movement cannot work properly. Add to that stiffness caused by RA, and the result is walking like Frankenstein!

My joints used for walking are changing and the effects are becoming noticeable not just to me, but to those around me. Add to that the fact that any hope for strenuous physical activity is pretty much gone for now. My daughter wants to go snow skiing but the best I could do is drive her there and sit in the lodge drinking cocoa. The hope is that treatments can keep the process at bay long enough so I can avoid more surgeries and using assistive devices just to carry out that common, everyday task we take for granted – walking.

Photo Credit: By Stefan Eggert (User:Berreu) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)], via Wikimedia Commons

---

[i] http://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-pathophysiology-2/

[ii] http://www.ajronline.org/content/189/6/1502.full

[iii] http://rheumatology.oxfordjournals.org/content/48/8/887.full

Read Full Post »

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.

Read Full Post »

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

Read Full Post »

RA Damages Soft Tissues – Not Just Bones

MRI and Ultrasound of RA damaged joints Image via Wikipedia

When people hear the general term arthritis, they typically think of an older person with joint pain. This concept misses the mark when describing rheumatoid arthritis (RA). When people think about RA, they might picture someone with grossly disfigured hands or feet. One of the symptoms of RA that doctors often examine is bone erosion – typically in the fingers.

But as an autoimmune disease, RA can impact much more than the bones. It can damage a variety of soft tissues including the eyes (iritis), lungs (fibrosis), heart, blood vessels (vasculitis), nerves (carpel tunnel), and skin (nodules, ulcers), and connective tissue (cartilage, tendons, ligaments).[i] Often-times, the soft tissue damage occurs long before bone erosion is visible or even before an official RA diagnosis comes.

Two symptoms which I personally experienced before an official diagnosis of RA were iritis – inflammation in the eyes, and torn Achilles tendons (an ongoing problem with me). Chronic tenosynovitis (inflammation of the sheath of a tendon), such as that found in rheumatoid arthritis, can result in the permanent damage and tearing of the involved tendon. Such tendon problems caused by RA are well known by the scientific community and are linked to joint deformities.[ii] Tendon problems have even been posited as being one of the most powerful predictors of early RA.[iii] Sophisticated imaging techniques developed in the last few decades, such as MRIs and ultrasound, can reveal connective tissue damage in joints caused from RA including tenosynovitis and bursitis.[iv] Bursitis, inflammation of the fluid-filled sacs that protect joints[v], often accompanies tenosynovitis. RA is also implicated as a cause of soft tissue damage in shoulders[vi] and cartilage damage in knees.[vii]

It is interesting to note that the diagnostic criteria[viii] used to diagnose RA, while including general joint synovitis as indicated by pain, swelling, and tenderness, don’t include other soft tissue problems. These criteria are in place in spite of the fact that some of the soft-tissue problems occur long before the presence so-called hallmark symptoms like bone erosion. It could be that such a wide variety of symptoms across patients occur and the criteria are based on those symptoms that tend to be universal. However, a quick read of patient blogs (see my list) reveals that many RA patients suffer profusely from soft tissue damage. From a patient perspective, it would be beneficial if soft-tissue damage from RA would be given increased attention in the general literature (it’s difficult to find information) and in diagnostic criteria.

---

[i] http://knol.google.com/k/rheumatoid-arthritis#

[ii] http://onlinelibrary.wiley.com/doi/10.1002/art.23016/full

[iii] http://rheumatology.oxfordjournals.org/content/48/8/887.full

[iv] http://www.ajronline.org/cgi/content/full/189/6/1502

[v] http://www.nlm.nih.gov/medlineplus/bursitis.html

[vi] http://www.jphc.org/index.php/jphc/article/viewFile/10/6

[vii] http://orthoinfo.aaos.org/topic.cfm?topic=a00212

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

Read Full Post »

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.

---

[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.

Read Full Post »

Twisted Fate

About two years ago was the first time I began to notice swelling and pain in my proximal interphalangeal (PIP) joints in both hands. The PIP joints are the middle knuckle in each finger (not including the thumb). Although I had other symptoms, this was really the reason for seeing my primary care physician ultimately leading to a visit to a rheumatologist and a RA diagnosis. Early on, my rheumy ordered x-rays and the radiology report indicated some bone erosion in these joints. In spite of being seronegative for RA factor, this finding was enough for my rheumy to quickly begin disease modifying medications eventually leading to the use of TNF blockers (Enbrel, Cimzia, now Humira). Since then, inflammation has spread to the some of my metacarpophalangeal joints (MCP) at the bottom of each finger and to the wrist (and elbow, and knees, and feet…).

Inflammation of the PIP joints is typical in RA patients and can lead to permanent deformities in the fingers.[i] Joint damage can come on rapidly if RA is not treated. I vividly recall my first encounter with RA about 20 years ago. In the days before major disease modifying medicines, my neighbor had severe RA and his hands, fingers, and feet were deformed beyond use. He was such a gentleman and upon shaking my hand, quickly explained why his fingers were so deformed. Surgery scars were prominent on each finger. Surgeons went in and clipped the ligaments in a futile attempt to slow the deformity.

Because of this, I’ve kept an eye on my fingers. A few months back, my rheumy ordered another round of x-rays and the good news was that the radiologist noticed no additional bone erosion. But since I live with my fingers every day, it’s easy for me to notice slight changes. Several fingers began to bend towards the outside (called ulnar drift) and some are no longer straight but are twisting/rotating (see photos).

I can certainly rejoice in the fact that bone erosion in my fingers seems halted at this time. And I can’t complain because many RA patients have dramatic joint damage and deformity. I suspect that the use of TNF blockers has something to do with my case. Never the less, I can see the changes over time.

---

[i] http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_clin_pres.html

Read Full Post »