(un)Realistic Expectations

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart: he is mine forever.” Psalm 73:26

I hope that everyone had a wonderful Thanksgiving holiday. My oldest came home from college and we were joined by a few friends from church. Other than the 18 hours of cooking over two days, it was a pretty relaxing affair. The highlights are the pumpkin, pecan, and sweet potato pies. But for some reason, everyone but me takes a special liking to the pumpkin torte that my wife makes.

I’m taking a break from the RA Weapons series to discuss how RA causes adjustments in expectations.

On Friday after Thanksgiving, the Christmas lights were installed on the house. It’s a fairly straightforward task being that the design hasn’t changed in five years and three children joined in to help. After the lights were up, the snowboards and skis were pulled down from storage for adjustments, tuning, and waxing. The kids learned to wax their own equipment. It’s fun to watch the kids embrace this lifelong sport. There are numerous mountains within an hour or so that have wonderful ski runs.

waxing skis http://www.flickr.com/photos/a2c_s_1980/

After the few hours on these responsibilities, the body made it clear that it had enough. The next couple of days resulted in much rest and joint pain. And of course, the ski/snowboard work got me thinking about how realistic (or unrealistic) my expectations are for future activities. Of all physical activities, snow skiing ranks the highest for me. My skis were waxed the other day but I have no idea if/when skiing will be a reality. But the time will come very soon when we’ll load up the equipment and head to the slopes. I’ll try to ski but my expectations are quite low at the time given the fact that a simple job of hanging Christmas lights kicked me pretty hard. Fellow RA bloggers Terry and Kelly recently spoke about how RA caused them to adjust their expectations for life activities.

This leads to a broader reflection on changes in expectations as RA takes a toll and medication changes are tried. In October, my doctor switched me from Enbrel to Cimzia. The last monthly dose of Cimzia was injected on November 4^th. The next injection is scheduled for this Wednesday. This will be the 3^rd injection since switching over from Enbrel.

Fellow bloggers Terry, Kelly, and I are in the process of trying new medications and we all seem to be attempting to come to grips about what to expect in terms of effectiveness. All three of us can point to a time when we were completely off major medications and can attest to the fact that symptoms were worse during those periods than we were on the “ineffective” previously used meds. But what can we expect with the new medications? In order help track impact and attempt to answer this question, I decided to keep a daily journal of RA symptoms starting in early November. This journal will be taken to my upcoming rheumatologist appointment.

In addition to listing specific symptoms, I created a scale of 1-10 for both energy level and overall joint health. Overall joint health included pain, stiffness, and swelling. A high number is positive and a low number is negative. I also tracked the number of days with headaches since I suspect Cimzia was causing these regularly. A simple spreadsheet was used to track the daily scores. A graph (see below) was produced to display a pattern over time.

The first thing I noticed was that everyday seems to be different. The second pattern is that energy and joint health appears to be related. And finally, there is a slight downward trend over the month since taking the Cimzia injection. This is not surprising since the effects wear off over time. The expectation is that the upcoming injection will bring some relief (and maybe more headaches). Relief is my hope.

I’m considering creating some sort of tracking tool based on this process so that RA patients can easily track changes over time. Feedback from readers would be appreciated. You can contact me via email or leave a comment on the blog.

Will Cimzia work long term? Will snow skiing be in store? These are questions that can’t be answered right now and expectations must be tempered.

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Chemicals Used in the Fight Against Rheumatoid Arthritis

Many of the first medical treatments for RA were chemical drugs that were actually developed for other diseases. Disease-modifying anti-rheumatic drugs, or DMARDs, are the hallmark chemical treatments for RA.[ii] These small molecule chemicals attack or incapacitate the enemy of RA, inflammation, using various processes. Many of these processes are not fully understood by scientists but suppression of the immune system resulting in less inflammation is suspected.

Methotrexate, plaquenil, sulfasalazine, Arava, cyclosporine, Imuran, Cytoxan, and gold salts are commonly used to treat RA. All of these are rather simple chemicals in terms of design, development, and production. This also tends to make them less costly relatively speaking. In heavier doses, some of these drugs are used as chemotherapies for various cancers. Plaquenil is used to treat malaria. If you ever want to help the uninformed really understand the seriousness of RA, let them know that you are taking a chemotherapy drug! Because they are somewhat harsh chemicals, the lists of side effects are rather lengthy.

Sulfasalazine was originally used as an antibiotic. But it is also thought to impact inflammation in the gastrointestinal tract. As mentioned in an earlier post, it is thought that 2/3 of the immune system lies around the intestines so it makes sense that sulfasalazine may reduce inflammation by impacting this area. This was the very first drug prescribed for my RA. No chance was given to see its impact because about 7 days into popping these large pills, I developed a severe allergic reaction. This occurred over the weekend and I was very close to heading to the emergency room. It took over a week for the sulfa to get out of my system. Also during this time, the symptoms of RA stepped it up many levels…that’s when methotrexate was prescribed.

I like to call methotrexate (MTX) the “chemical weapon” of choice against RA. At higher doses, it serves as a chemotherapy drug for some forms of cancer. In this use, it actually acts as a cell killer…attacking cells that divide quickly (like cancer cells). At lower doses, MTX acts as an anti-inflammatory by affecting T-lymphocytes. Methotrexate is probably used by more RA patients than any other treatment and is regularly used in combination with biological treatments (a future post).

http://www.flickr.com/photos/psyberartist/

My experience with MTX was short-lived. I took the first dose (7.5mg) on a Saturday as many do in an effort to fight the common side effects of nausea and headaches. By week three, it was clear that I couldn’t tolerate it at all. Besides the constant nausea and headaches, my brain was in a state of fog, my body hurt (not just from the RA), and I was totally nonfunctional. My rheumatologist said that a portion of patients cannot tolerate MTX. I knew it would be me because of my sensitively to every medicine under the sun. That’s when Enbrel was started.

Even though I’m no longer taking any small molecule chemicals for RA, I’m glad that they exist and provide relief for many. But the side effects are many and patients need to be fully aware of them in an effort to weigh benefits and costs.

 

[ii]
http://www.webmd.com/rheumatoid-arthritis/modifying-medications

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Nuclear Weapons – Steroids

The first thing one must discuss when the topic of steroids and RA comes up is that there is a big difference between anabolic and corticosteroids. The former are associated with muscle mass gain popularized by illegal use in athletes. The later are connected with metabolism and immunity. Now that we’ve cleared up that little issue, we can delve into the use of steroids in the treatment of RA.

http://www.flickr.com/photos/denn/

Corticosteroids are powerful anti-inflammatory medicines and they are regularly used for all sorts of inflammatory problems. The most common forms of administration in RA patients are joint site injections and oral pills. But this effectiveness of fighting inflammation comes with side effects. The most common side effects of corticosteroid use include the following:

• Elevated pressure in the eyes (glaucoma)
• Fluid retention, causing swelling in your lower legs
• Increased blood pressure
• Mood swings
• Weight gain, with fat deposits in your abdomen, face and the back of your neck
• Cataracts
• High blood sugar, which can trigger or worsen diabetes
• Increased risk of infections
• Loss of calcium from bones, which can lead to osteoporosis and fractures
• Menstrual irregularities
• Suppressed adrenal gland hormone production
• Thin skin, easy bruising and slower wound healing [i]

Other side effects I would like to add to this list are difficulty sleeping and redness of the skin. For joint injections, patients will often overuse the joint because it feels so good resulting in further damage to tissue. There are probably other side effects and I hope readers chime in with their stories. This long list of side effects is why I categorize steroids as the Nuclear Weapon against RA. While they do an excellent job of fighting the enemies of RA-inflammation-they impact the entire body.

http://www.flickr.com/photos/scfiasco/

Most RA patients have experienced the famous Medrol Dose Pack. This handy package starts with 6 pills the first day and ends with one pill on day six. The first time I was prescribed Medrol was a weekend when I had a terrible reaction to methotrextate. My doctor pulled me off methotrexate and immediately put me on a dose pack in an effort knock down the RA symptoms until I could get into his office to begin Enbrel. The dose pack really helped me feel better until Enbrel started working. But because of the side effects, I try to avoid them as much as possible.

This was not my first experience with corticosteroids. Five years ago, before even being formally diagnosed with RA, a major case of iritis (inflammation of the eye) hit both eyes. It finally took a visit to an Ophthalmologist to figure out what was happening. He immediately prescribed regular doses of prednisone eye drops. They started out every two hours (all night long) and eventually tapered off over the next month. One interesting side note…this episode was the first sign of RA. The Ophthalmologist started asking me strange questions about joint problems and told me that iritis in both eyes simultaneously is an indicator of autoimmune disorders. No blood tests were run and I quickly forgot about it until other symptoms cropped up later. 

Just like superpower countries, a stockpile of corticosteroids remains stashed away just in case things get out of hand and the inflammation enemy strikes with a vengeance. Currently though, there seems to be détente between the enemy and my body. Other medicines seem to be doing the trick. But my finger remains ready to push the button releasing a nuclear war if needed.

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[i]
http://www.mayoclinic.com/health/steroids/HQ01431

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Arthritis Foundation Drug Chart

What timing! The Arthritis Foundation publishes a comprehensive drug chart. This will be a great tool to go along with my series of blogs on weapons against RA.

http://www.arthritistoday.org/DrugGuide/drug-chart.php

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Weapons in the War Against RA Inflammation

RA is an autoimmune inflammatory disease meaning that your immune system attacks itself causing inflammation resulting in pain, heat, swelling, fatigue, malaise, and permanent joint destruction (described in an earlier blog post). Historically, medical treatments against RA are designed to reduce inflammation. I will use a war analogy to describe this battle, discuss the weapons used, and describe some of the battle scars I’ve experienced thus far. This war against inflammation is multifaceted and anyone diagnosed with RA long enough will likely experience most of the weapons from the doctor’s arsenal. Here’s how I categorize the weapons using military terminology.

• Conventional – NSAIDs
• Nuclear – Steroids
• Chemical – Methotrexate and others
• Biochemical – biological drugs
• Natural – diet

In this post, I will start with conventional weapons. Subsequent posts will systematically address the other categories.

http://www.flickr.com/photos/exalthim/

I liken non-steroidal anti-inflammatory drugs ( NSAIDs) to conventional weapons. Thousands of years ago it was noticed that chewing on the bark of willow trees reduced fever and pain. Aspirin was eventually developed in the 1800s and it is now the most widely used medicine in the world. Many other chemicals over the years joined the conventional weapon arsenal including ibuprofen, naproxen, celebrex, and vioxx (removed from the market). NSAIDs work by inhibiting enzymes that promote inflammation. They have provided much relief for many arthritis sufferers over the years. But if taken over long periods of time for chronic pain, NSAIDs leave collateral damage including stomach problems and elevated risk of heart attacks and strokes.

I occasionally took NSAIDs over the years mostly for headache or fever. After ankle surgery in 2007, my orthopedic doctor recommended that I take up to 1,600mg of ibuprofen a day.  Two to three days later my stomach was burning up. I had experienced regular heartburn over the past 10 years and even had my stomach scoped at one time (nothing was found). It was no surprise that ibuprofen caused stomach upset. After my second ankle surgery, I tried Celebrex since it supposedly did not cause as many problems. Stomach upset eluded me but Celebrex did not seem to have much anti-inflammatory impact. After 30 days, the insurance company sent a terse letter indicating that they were not going to cover Celebrex unless my doctor had a good reason. They argued that over-the-counter NSAIDs are just as effective and cheaper.

This is where my use of NSAIDs ended until recently when my rheumatologist prescribed Mobic (meloxicam). Enbrel stopped working for me and joint pain and damage was increasing. The first signs of finger bending were noticed. He felt that while I was waiting for my new biological medicine, Cimzia, to take effect, I should take a NSAID. He knew about my intolerance of NSAIDs but thought Mobic was worth a try since people typically display less problems with it. After two doses (taken twice a day), I could tell that my stomach didn’t like it either. I stopped taking it. I think about pulling it out and giving it another try; especially on those days when joints are screaming at me. But the thought of those stomach juices churning inside keep from reaching for those little yellow pills. While conventional warfare against RA via NSAIDs works for some, many cannot tolerate the side effects.

Next post…nuclear weapons

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Cimzia Update

A second dose of Cimzia (certolizumab pegol) was injected Wednesday evening. Since Enbrel was no longer working well, my rheumatologist recommended trying a new medication. Cimzia, which was recently approved by the FDA, is designed to stay in the body longer thereby making it more effective. The nurse stated that about 15-20 patients in their office switched to Cimzia after Enbrel and Humira stopped working for them.

Below is a photo showing all the paraphernalia associated with self-administration of the antibody treatment. I do “enjoy” the ergonomically designed syringes!

I noticed less fatigue last month after the first injection although joint pain and inflammation continued. The first clear evidence of finger joint bending was noticable. My knee was bothering me after swimming a little (so much for swimming as a good exercise for RA). The fatigue returned over the past few days. Since swine flu made a visit to our house last week (my son had it), I debated whether I should wait to take the second dose. Cimzia lowers the immune system increasing vulnerability to infections. We were still in the incubation period for the flu. But I realized that the toll of RA on my body trumped anything else and I gave myself the second injection. The day after the 2nd injection brought an obvious increase in energy, less “brain fog”, and less joint stiffness and pain.

My rheumy said to give it a good 3-4 months before making any long-term judgements about the efficacy of Cimzia.  Since the pain was still present and finger bending noticeable, my rheumy suggested that I try Mobic (meloxicam) which is a non-steroidal anti-inflammatory (NSAID). I can’t tolerate ibuprofen so we’ll see how this goes. Thus, another weapon is added to the chemical arsenal designed to fight RA in my body.

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Inflammation – the Good, the Bad, and the Ugly

On a long plane trip from Orlando back home to Seattle, an article in the November 2009 issue of Scientific American grabbed my attention. In the article, called “New Culprits in Chronic Pain”, the author discusses chronic pain that is not alleviated by traditional medications like morphine.[i] The offender appears to be overactive nerve cells called glia that help regulate nerve messenger chemicals. As I flipped to a diagram showing the processes involved, I was surprised to see that familiar enemy of RA patients called tumor necrosis factor (TNFα) listed as an inflammatory cytokine being released by the glia. The first thing that came to mind was that TNF blockers like Enbrel may help. A turn of the page revealed a table listing potential medicines being tested to help fight chronic pain…Etanercept (Enbrel) was listed as being in human trials. Excess inflammation seems to be connected to numerous diseases and medical problems.

Inflammation is normally a good thing. It’s part of an immune response when an infection or invader gets inside the body.[ii] My son recently had the flu (probably swine flu since it’s running rampant around here right now). His body was fighting the virus through inflammation which included fever, chills, fatigue, headaches, loss of appetite, and muscle pain. [iii] My son’s reaction to the flu is an example of acute or short term inflammation. He’s better now and fortunately no one else in the family shows signs of the flu but we’re still in the incubation period for a few more days. (By the way…anyone out there get an H1N1 vaccine yet?)

Chronic or long term inflammation is bad and is linked to all sorts of ugly diseases including RA, inflammatory bowel disease, psoriasis, lupus, scleroderma, polymyositis, vasculitis, rosacea, celiac disease, multiple sclerosis, asthma, and even arthrosclerosis leading to heart attacks and strokes.[iv] [v] [vi] And now chronic pain is associated with inflammation.

http://commons.wikimedia.org/wiki/File:Psoriatic_arthritis_ankle_ar1934-3.gif

As mentioned in an earlier post, inflammation results in messenger proteins called cytokines being released by cells. [vii] In autoimmune diseases like RA, the system is out of whack and too many of these cytokines are released resulting in ongoing inflammation. Most widely used medical treatments for RA are targeted at reducing the inflammatory impact of cytokines.

One of the least publically understood aspects of inflammation is chronic fatigue. This is way beyond just being tired – I refer to this feeling as being run over by a truck. Other than permanent joint damage, for me this is the hardest aspect of dealing with RA. Malaise, lack of interest in social interaction, brain fog, and depression are regularly linked to inflammatory diseases. The causes for this escaped scientists. But now researchers are beginning to unravel possible connections between inflammation and the brain.[viii] Interestingly, this recently discovered connection brings us back to the research about chronic pain – the glia nerve cells are implicated. Perhaps these connections will lead to new treatments that will keep RA sufferers from being “run over by the truck” as a result of chronic inflammation!

In the meantime, the multifaceted fight against inflammation continues (my next blog topic).

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[i]
http://www.scientificamerican.com/

 

[ii]
http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/I/Inflammation.html

[iii]
http://my.clevelandclinic.org/symptoms/Inflammation/hic_Inflammation_What_You_Need_To_Know.aspx

[iv]
http://www.crccid.com.au/www/119/1001127/displayarticle/1001196.html

[v]
http://www.cibliga.com/en/index.html

[vi]
http://www.rosaceatoday.com/RoleofInflammation.asp

[vii]
http://nic.sav.sk/logos/books/scientific/node32.html

[viii]
http://www.sciencedaily.com/releases/2009/02/090217173034.htm

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