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Corticosteroids or glucocorticoids are powerful anti-inflammatory drugs commonly used to treat a variety of medical conditions. They are not to be confused with anabolic steroids that are notoriously abused by athletes.1 Anabolic steroids are associated with muscle mass gain and corticosteroids are connected with metabolism and immunity.

Most every RA patient has probably taken oral steroids in the form of pills or a dose pack that tapers down the dose over a period of time. Oral steroids are effective at providing quick reduction of RAsymptoms although long-term use is generally discouraged and even short-term use is being questioned.2 When taking an oral steroid, the drug goes throughout the entire body systemically. But there are other forms of steroids that are directly injected into a specific area of the body in an effort to treat RA related symptoms. Since being diagnosed with RA, I’ve had one steroid injection into my right knee, four into my left hip, one into my neck, and one into my right elbow.

Read the rest of the post at http://rheumatoidarthritis.net/living/steroid-injections-treating-ra-symptoms/

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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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When dealing with a chronic illness, it can sometimes feel like being a patient is a full time job. Last week drove home this feeling. It began Wednesday with a visit to a new internist (general practitioner-GP). I decided to switch GPs for several reasons primarily to get all of my doctors under one clinic roof who all share the same electronic system and who can easily connect with one another if needed. Being that this was a first visit, additional medical history paperwork was required. The evening before, I typed up a brief history, printed it out, and brought it along. My daughter joked that it looked like I was writing a school report! I’ve learned that this is a great way to lay everything out in black and white so the doctor can get the whole picture quickly. This visit ended with the scheduling of a follow-up in two weeks along with lab tests for fasting glucose and lipid panels (related to metabolic syndrome – see earlier posts).

On Friday, most of the day was spent on medical tasks. It began with a weekly methotrexate injection right after breakfast. I learned that the syringes sent by the mail order pharmacy had huge needles which were not fun pushing into my stomach. I made a note to pick up smaller insulin needles later in the day.

I then headed out the door for a visit to my rheumatologist. I was so happy when the nurse and not the medical assistant came to bring me to the examination room. This was because I needed her to help process a co-pay assistance for the last two Actemra infusions I had in March and April. The almost $900 of co-pays were sitting on my bill from the clinic and I wanted to get those cleared. The nurse needed to make copies of the bill and my co-pay debit card in order for money to be loaded on the card so I can pay the bill. Once the funds are loaded, I will need to go to the business office of the clinic to pay the bill.

My rheumy came in and we had a long discussion about how things were going. She decided to up the dose of Remicade to 600mg per infusion and give infusions every four weeks instead of every six weeks. We’re just not seeing the impact expected by these RA treatments. After being on so many treatments, it’s easy to get cynical and I work hard at trying to avoid falling into a negative mindset. We also discussed recurring headaches and she added leucovorin once a week to be taken after the methotrexate injection. Leucovorin in a form of folic acid and is used to combat side effects of methotrexate. She also decided to give a cortisone shot in my right knee which has been getting worse over the past few months. It was a pretty painless procedure and after several days I can notice much less pain and popping. I just wish every other joint could feel that way!

After the rheumy appointment ended, I went straight to the infusion clinic to see how soon I could get in for an infusion at the new dose and treatment schedule. They said they could get me in that afternoon. I scheduled it and then as I walked away, I realized that insurance approval would likely be required first. I went back to the rheumy’s office and talked to the nurse. She confirmed that approval would be required and that she would call me when it came. Back up to the infusion clinic to cancel the appointment! But I wasn’t done with the rheumy yet. She ordered five lab tests – routine liver, kidney, and inflammation tests – so I headed to the lab for a blood draw. The c-reactive protein test came back high once again confirming that systemic inflammation is actively at work and the RA is not under control (but then again, I already knew that based on the way I feel).

After this appointment ended, I had an appointment with my neurologist. Nasty headaches had been raising their ugly head again and he wanted to figure out what was going on. The good thing is that the addition of an injection of solu-medrol cortisone prior to Remicade infusions helped control headaches associated with the infusion. He believes that my body is reacting to all the medicines and he added a preventative medicine in addition to the Imitrix abortive medicine I already use. He said that he would want to get an MRI if I wasn’t better in a couple of weeks.

It was noon by the time I left the clinic and then I went to the pharmacy to pick up some scripts – and the smaller syringes! That took about an hour as there were questions on the script along with new health insurance to process (thanks to changes in U.S. healthcare laws).

Almost the entire day was spent navigating medical systems and providers. I know the clinic like the back of my hand…best place to park, location of restrooms, coffee shop on 1st floor, lab on 2nd floor, rheumatology office 4th floor, infusion clinic 5th floor, neurology 8th floor, internal medicine 9th floor. Whew! I was tired and ready for something non-medical related at the end of this crazy day. Add to such a day the time spent in the infusion clinic, time processing insurance and payment paperwork, communicating with doctors via phone and email, and down time just trying to rest, being an RA patient feels like a job.

The good news is that during one of the of doctor visits, I picked up the July issue of the city magazine because the cover story was about “Top Doctors” in the city. I glanced through the different sections and was so pleased to find my rheumatologist and neurologist both listed as one of the top six in the city in their respective specialties. This helped confirm that I choose the right doctors and was under quality care.

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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).

photo (8)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.

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450px-Walking_ManThe 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

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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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Snap, Crackle, Pop

Magnetic resonance imaging of the knee demonst...

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.

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