A Blood Test for RA Before Symptoms Appear?

Swedish scientists recently published a study in the American College of Rheumatology (ACR) journal Arthritis and Rheumatism in which they tested blood samples of individuals prior to being diagnosed with RA and compared them with a control group.[i] They found significantly higher levels of inflammatory cytokines in people who were later diagnosed with RA. The researchers noted,

Individuals in whom RA later developed had significantly increased levels of several cytokines, cytokine-related factors, and chemokines representing the adaptive immune system; after disease onset, the involvement and activation of the immune system was more general and widespread.

Perhaps research like this could lead to the development of screening tests for individuals who may be at higher risk of developing RA. Such tests could help lead to early identification and treatment for those who get RA.

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

These researchers were also able to hone in on the cytokines that may play a role in initiating RA. Interestingly, the levels of various cytokines changed over time as diagnosis occurred and as the disease progressed. They noted that later in disease progression, the notorious cytokine TNF is not as abundant as earlier. This finding may have implications for the popular TNF blocker biological medicines like Enbrel and Humira.

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[i] http://www3.interscience.wiley.com/cgi-bin/fulltext/123235557/HTMLSTART

Is RA Under Control?

Things appear to be looking up this week. El niῆo brought unusually warm and sunny weather to Seattle. This allowed for an entire day spent outdoors catching up on some neglected chores like car repairs, disposing of the Christmas tree, and trimming the dog. Unfortunately, the weather patterns may wreck havoc on the upcoming winter Olympic games held just a 100 miles north in Vancouver, BC. There hasn’t been much fresh snow in a while and temperatures are above normal (see article).

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

These chores may not have been possible a few months ago…or at least tackling them all in an entire day. While joint pain, stiffness, and fatigue continue to linger around, they are much diminished and don’t distract. Four months of Cimzia injections appear to be putting RA into a state of check. Tracking of symptoms reveal a steady decrease over time. My rheumatologist was quite pleased and indicated that there would not be a need for another office visit for three months. That’s good news since monthly visits were the norm for quite a while. My calendar and bank account are also grateful. Whether or not it will be possible, my goal is to get down to only one medication within the next month…Cimzia injections.

While visiting with the gastroenterologist last week, he was curious about my use of Cimzia. He treats patients with ulcerative colitis and regularly prescribes Humira. Cimzia is also approved for ulcerative colitis but he said that his patients refuse to take it because “it hurts too much.” I laughed because I prefer the once a month injections. No pain, no gain!

If there were better conditions at the ski resorts, I would’ve went skiing on this MLK holiday instead of doing chores. In the meantime, I’ll take the sunny skies and RA symptoms that appear to be under control.

Raise your Right Hand…”I Vow to Never Take NSAIDs Again”

Just as RA symptoms seem to be under better control with Cimzia, other related medical issues creep in. This time it’s lingering side effects from NSAIDs.

Most of us over 40 remember those wonderful tasting, chewable orange aspirin pills. The distinct taste remains ingrained in memory. These days, sugary, fruity liquid versions of ibuprofen sit on the shelves of most parents. Such begins many people’s experience with NSAIDs. As a side story, when I was two years old, I ate a bunch of those orange pills and told my parents that “I took all of my medicine.” The story ends with a stomach pumping at the hospital and a federal requirement for child-proof medicine bottles.

Non-steroidal anti-inflammatory drugs (NSAIDs) are a commonly prescribed treatment for RA inflammation (see earlier post). In addition to taking aspirin as a child, I’ve taken massive doses of ibuprofen (up to 1,600 mg a day), tried naproxen, and celebrex during earlier stages of RA. Once a rheumatologist got involved, meloxicam and salsalate were tried since they are believed to cause less stomach problems. Meloxicam lasted two days before the telltale signs of stomach upset began so the anti-inflammatory effects were never felt. During the first ten days, salsalate did wonderful things for RA induced inflammation. Then one fine day, unspeakable stomach pain started. Use of acid blockers helped but things didn’t seem to get better. Finally, after almost four weeks of gastric suffering, I decided it was worth visiting a gastroenterologist. Within five minutes he suspected an ulcer and scheduled an endoscopy of the upper GI tract the next day. While the scope found irritation of the stomach and esophagus, no ulcer was visible. The doc intimated that an ulcer may have been present earlier but had healed. That was good news indeed.

This entire set of experiences are not surprising since the side effects of NSAIDs are clearly documented.

These effects are dose-dependent, and in many cases severe enough to pose the risk of ulcer perforation, upper gastrointestinal bleeding, and death, limiting the use of NSAID therapy. An estimated 10-20% of NSAID patients experience dyspepsia, and NSAID-associated upper gastrointestinal adverse events are estimated to result in 103,000 hospitalizations and 16,500 deaths per year in the United States, and represent 43% of drug-related emergency visits.[i]

Wow! That statement is frightening. On top of GI problems, NSAIDs are also linked to an increase in heart attacks and stroke. [ii]

http://www.flickr.com/photos/untitled13/

Many arthritis patients are able to tolerate NSAIDs just fine and find relief from their use. But I must fall under that 10-20% who cannot. Therefore, “I vow to never take NSAIDs again!”

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[i] http://en.wikipedia.org/wiki/Non-steroidal_anti-inflammatory_drug

[ii] http://www.webmd.com/rheumatoid-arthritis/guide/nsaids-rheumatoid-arthritis

Cimzia and RA – 4 Months of Treatment

It was interesting travelling during the holidays and needing a Cimzia injection for RA. Not knowing how it would all work out, a quick call to the specialty pharmacy resulted in a pleasant response and a promise to deliver the package of syringes (packed in ice of course) to my in-law’s house more than two thousand miles away in the blizzard conditions of the Midwest. They even included a sharps disposal box!

Snowy Drive, http://www.flickr.com/photos/ozute/

The package couldn’t have come any sooner as the three or so days before the injection, the symptoms of RA began to raise their ugly head. I resorted to take a 4 mg pill of methyprednisolone one morning in a feeble attempt to knock down inflammation. We were in a mad rush out the door to travel to a nearby city to attend a sporting event when the UPS truck navigated the foot of snow and ice to drop off the package. It’s interesting to note the responses from family members when they saw two large syringes. I think it drives home the seriousness of the disease.

Off in the car we jumped with the Cimzia in hand. It needed to warm to room temperature before injecting so 20 minutes down the road I asked my brother-in-law to pull off the highway so I could do the deed. My oldest son, who had never seen me inject before, was quite intrigued with the process. After four times through this routine, it seems to get easier except for those “bleeders” the last two times. I must have hit a vein somewhere.

A daily journal of energy levels, joint problems, and other observations help track conditions (see earlier post). On a scale of 1-10, I’ve been averaging about a 6 for the past 2 ½ months. During that time, I’ve never really dipped below 4 or above 8. I am coming to realize that this is probably success. While there are still ups and downs demonstrated in a variety of ways (including one infection), and RA is always lingering around, hope abounds that perhaps Cimzia is helping. Realizing that RA and treatments can be a moving target, I’ll count my blessings for now.

Natural Weapons Against RA

This post concludes the series on Weapons in the War Against RA Inflammation. The focus on inflammation is due to the fact that RA is a disease of chronic inflammation. Thus far we’ve  examined Conventional Weapons – NSAIDs, Nuclear Weapons – Steroids, Chemical Weapons– Methotrexate and others, and Biochemical Weapons – biological drugs. The arsenal in the war is vast but comes with pros and cons. 

The historical medical approach to treating RA seems to center on the use of drugs. Out of frustration with the lack of success of treatments, RA sufferers often look for other cures on their own. Indeed, some natural approaches to reducing inflammation may be worth trying. 

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

I classify natural weapons against inflammation into two categories, Ingested Substances and Physical Treatments. Ingested Substances include supplements, diet, and herbs. It stands to reason that one should be careful what you put into your body. Eating unhealthy food is unwise in general and certain foods even increase inflammation.[i] [ii] Some supplements like fish oil may even reduce inflammation.[iii] There may be interactions between supplements and medications so be sure to tell your doctor about everything you take. A few months ago, in response to reading about a possible relationship between diet and autoimmune diseases (see earlier post), I eliminated dairy and gluten for one month. I didn’t notice any difference before, during, or after this elimination diet. I’m glad because a daily latte is a must (maybe caffeine should be included on the supplement list)! I still try to eat as healthy as possible. I also take fish oil and use flaxseed on a regular, but not daily, basis. 

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

Physical treatments include procedures and substances applied externally and may include heat or cold, massage, lotions, stress management, physical therapy, exercise, and prayer. [iv] [v] Some of these treatments like heat, massage, and lotions have short term effects. There’s nothing better than spending some time in my hot tub each evening. And I’ll apply a topical to a flaring joint periodically. Stress management is a wise life skill for anyone but RA sometimes causes us to slow down. I think that’s our body’s way to speaking to us that it needs rest. I’m still struggling with that exercise thing and there are many conflicting views about it and RA. I regularly receive prayer for my RA symptoms. 

An examination of natural treatments must be tempered with a word of caution. Beware of quick cure schemes and tonics! Books, websites, and TV commercials are used to prey upon those who suffer from chronic diseases. Run a simple internet search for RA and you’ll find all sorts of claims like, “New breakthrough for arthritis discovered!”, “I was cured of arthritis. You can be too!”, and “Diet can send you into remission.” I apologize in advance for any reader who was hoping to find a miracle, natural treatment for RA in this post because it just doesn’t exist. This quote sums up my view on natural therapies… 

Alternative therapies are popular among people with rheumatoid arthritis, however, they should complement, not replace, conventional care.[vi] 

I offer the following words of advice based on the Weapons series: 

1. There is currently no known cure for RA and anyone who tells you otherwise is wrong.
2. Take your prescribed medicines. Particularly those that have a long term impact on RA-induced inflammation like methotrexate and biologicals.
3. Be willing to try various medicines to see what works. When one doesn’t work or stops working, try something else.
4. Eat a healthy, balanced diet.
5. Speak with your doctor about any supplement you take.
6. Live life with moderation.
7. Use any safe method for short term relief of pain.
8. Don’t fall for schemes that prey on the chronically ill who are desperate for a cure.
9. Hold onto to hope as new anti-inflammatory treatments are always in the pipeline.
   

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[i] http://www.webmd.com/diet/guide/anti-inflammatory-diet-road-to-good-health 

[ii] http://livingwithra.wordpress.com/2009/07/19/the-trio-of-triggers-of-autoimmune-diseases/ 

[iii] http://www.mayoclinic.com/health/rheumatoid-arthritis/AN00198 

[iv] http://www.webmd.com/rheumatoid-arthritis/guide/rheumatoid-arthritis-natural-treatments 

[v]http://www.umm.edu/patiented/articles/what_lifestyle_changes_can_help_manage_rheumatoid_arthritis_000048_10.htm 

[vi] http://altmedicine.about.com/od/arthritis/a/rheumatoid.htm

RAflections on 2009

Here are musings about 2009 and RA…

1. Life change is inevitable but RA brings about changes at a more rapid pace.
2. Ignorance is not bliss when it comes to RA.
3. Misconceptions persist about RA in the general public.
4. Experimenting with RA medicines is the norm.
   

   http://www.flickr.com/photos/sally_12/

5. A most amazing group of RAers are online.
6. Self-injection is not fun but needle pain is short-lived compared to RA pain.
7. Malaise caused by RA is above and beyond anything ever imagined.
8. My body does not care for corticosteroids and non-steroidal anti-inflammatory drugs (NSAIDS).
9. Chronic illness brings clarity of perspective.
10. God can be trusted and gives grace at the time of need.

Happy New Year to all! Andrew

Christmas Peace

Christmas takes on fresh perspective as one grows older and learns to face the challenges of life…including dealing with RA. Yes, the gifts, food, and family time are all still there. But true and lasting peace is not found in these things. And as distracting as dealing with a chronic illness can be, it cannot push away true peace.

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

RAers may deal with pain, multiple medications and their side effects, and thoughts about the future. As serious as those things may be, in the grand scheme of things they pale in comparison to the promise made by the angels to the shepherds on that first Christmas day…

“Glory to God in highest heaven,
      and peace on earth to those with whom God is pleased.” Luke 2:14 (NLT)

My favorite telling of this story is when Charlie Brown asks, “Isn’t there anyone who knows what Christmas is all about?” Linus replies with a beautiful monologue. It is a must watch every year and can be found on YouTube.

I will be taking a blogging break until after the 1^st of the year. I plan to write future posts on natural weapons against RA, genetics and effectiveness of TNF-blockers, and pharmaeconomics (costs and benefits of expensive treatments).

Blessings to all until then. Andrew

Da Knee Bone’s Connected to the…

Three important lessons of Living with RA were gleaned in the past few days. As mentioned in the last post, the NSAID Salsalate caused a serious stomach reaction and I had to stop taking it. Over the years, Prilosec (omeprazole) always did a bang up job controlling overactive stomach acid. But I’ve been taking citalopram and a quick search of the internet showed that Prilosec causes it to not be broken down very quickly. This means that side effects of citalopram increase. For several days, I suffered with stomach pain, carefully watched what I ate, and drank lots of water. Out of frustration, I dug deep into the properties of over-the-counter stomach acid blockers. Low and behold, I learned that Pepcid (famotidine) is an acid blocker that does not affect the breakdown of most other medications. A quick trip to the local drug store netted a batch of Pepcid Complete (actually, the local brand) that contained famotidine plus calcium and magnesium antacids. Ah…relief at last!

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

Not a day later I suspected a bacteria of some sort decided to visit my urinary tract. On a Sunday, the local urgent care was the only place to go. After several hours there, prostatitis, a common infection in men, was diagnosed. I knew a strong antibiotic was in order and ciprofloxacin (commonly known as Cipro) was prescribed. (On a side note, as an RA patient I noticed that the nurse and doctor treated me much differently than I had ever been treated as a “regular” patient. They spent more time with me and asked a lot of questions. The doc even got empathetic and asked if I need help for pain to which I replied that I’m used to it).

After getting home, I began to read about this new medication. A chuckle broke out when I read that joint stiffness was a possible side effect…yea, like I’d notice that! A list of possible drug interactions included methotrexate (not taking that any longer) and steroids (I can avoid those for a while). Reading further down the list, the experts indicated that Cipro should not be taken along with calcium or magnesium. The pharmacist, in a required consult to pick up the cipro, mentioned this as well. Out went the Pepcid Complete I just purchased. I had to pick up a package of regular Pepcid without the antacids.

A click on the next page of warnings revealed that Cipro antibiotics…

“…are associated with an increased risk of tendinitis and tendon rupture in all ages. This adverse reaction most frequently involves the Achilles tendon, and rupture of the Achilles tendon may require surgical repair. Factors, in addition to age and corticosteroid use, that may independently increase the risk of tendon rupture include strenuous physical activity, renal failure, and previous tendon disorders such as rheumatoid arthritis.”[i] 

Wikimedia Commons

Now it was beyond laughing. Both of my Achilles tendons, as a result of RA, were already torn and required surgical repair in the past few years. A quick ring to the on-call rheumatologist brought assurance to go ahead and take the Cipro. Then, I remembered that infections are a common side effect of taking immunosuppressing TNF-blockers like the Cimzia I inject every month. I wondered if the infection was brought about by Cimzia. If a RAer has an infection, future injections of the TNF-blocker are usually withheld until it clears. The rheumy assured me that the infection would likely be gone by the time of the next injection (January 1^st – Happy New Year – ouch!). Time will tell.

This entire process taught me three important lessons

1. Everything’s connected
2. Carefully read and search information BEFORE starting any new medications
3. Generalists may treat chronic disease patients  with more compassion

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[i] http://www.rxlist.com/cipro-drug.htm

Two Steps Fowards, One Limp Back

One important lesson that all RAers learn is that every day brings with it a new set of experiences and adventures. Plans to complete the Weapons Against RA series were put on hold once again. I’ve been gathering information about natural treatments but need to put more thought into this huge and controversial topic. Instead, this post represents ramblings about recent adventures.

As reported earlier, the new biological medicine Cimzia seems to be working with higher levels of energy and less joint problems. After a wonderful experience snow skiing last week, the days following represented a set of challenges. That was not unexpected. Physical or emotional strain seems to be followed with an RA flare in symptoms. It wasn’t too bad this time, just a lack of energy and stiffness for a few days. That was until an unforeseen medicine complication hit.

Non-steroidal anti-inflammatory drugs (NSAIDs) and I don’t get along very well (see this post on NSAIDs). In an attempt to provide some pain relief, my rheumatologist had me try various NSAIDs that are designed to cause less stomach upset. After failing at Mobic (meloxicam) last month, the latest NSAID attempted was Salsalate. This modified version of aspirin is supposed to cause fewer stomach problems. I started taking it two weeks ago and noticed almost immediate pain relief. After two weeks it felt like perhaps a solution was at hand. But yesterday morning that tell-tale heartburn started and by midday the pain was so bad that a trip to the ER was close at hand. Carefully monitoring diet and taking massive doses of antacids and anti-gas medicines got things to a tolerable level by bedtime. Of course, by then things spiraled into a bad night’s sleep which made today one of those, ”just get through it” kind of days.

The joy of skiing and a new biological drug that appears to be working was tempered by a few setbacks. These two steps forward, one step back responses to RA represents the norm. In the movie Parenthood starring Steve Martin as Gil, his Grandmother gives a most wonderful piece of advice…

[Gil has been complaining about his complicated life; Grandma wanders into the room]
Grandma: You know, when I was nineteen, Grandpa took me on a roller coaster.
Gil: Oh?
Grandma: Up, down, up, down. Oh, what a ride!
Gil: What a great story.
Grandma: I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn’t like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it.[i]

RAers don’t ask to ride this roller coaster. But I want to make the most of both the ups and downs!

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

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[i] http://www.imdb.com/title/tt0098067/quotes

The Brain Fog of RA

A quick read of the experiences of RA patients will reveal not only a common set of physical symptoms, but also an expression of changes in mental states over time.  These mental symptoms include mood swings, lack of interest in social interaction, depression, and what I like to call “brain fog” or more scientifically, cognitive dysfunction. Brain fog is associated with many autoimmune disorders. But be careful, there are many pseudoscience websites and “experts” out there who try to peddle remedies for brain fog.

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

The connection between mood and RA has been known for some time. In fact, as far back as 1970, scientists reported a correlation between joint symptoms and mood in RA patients.[i] And these results were repeated numerous times in the scientific literature. [ii]

For many with RA, mood changes associated with RA are more difficult to cope with than the physical symptoms. It’s quite frustrating when your brain just won’t “get up and work right.” Yet, the American College of Rheumatology (ACR) does not include mood/emotional changes in its diagnostic criteria for RA. This is the case in spite of the fact that “nearly a third of patients with an inflammatory disease may develop depression.” [iii]

Cognitive impairment of any sort is not “just in your head” as many friends, family members, and even doctors believe. I argue that there are a set of biochemical processes involved with RA that bring about these symptoms. As mentioned in an earlier post, there are a set of biochemical processes involved with RA. Part of these processes includes the overproduction of inflammatory chemicals called cytokines. According to some researchers,

“Cytokines and their receptors are expressed in the brain. They interact closely with neurohormones and neurotransmitters….In animal models, they affect behaviors such as food intake, temperature regulation, and social exploration.”[iv]

RA related inflammatory cytokines include interleukin-1, interleukin-6, and tumor necrosis factor-alpha (TNF). These cytokines are the target of many biological medicines for RA. They are also related to depression. [v] [vi] One group of scientists demonstrated the connection between cytokines and mental changes in RA patients.

“The ‘cytokine hypothesis of depression’ implies that proinflammatory cytokines, acting as neuromodulators, represent the key factor in the (central) mediation of the behavioural, neuroendocrine and neurochemical features of depressive disorders. Several medical illnesses, which are characterised by chronic inflammatory responses, e.g. rheumatoid arthritis, have been reported to be accompanied by depression.” [vii] (emphasis mine)

For me, the link between RA and mental symptoms is clear. There are times when my brain shuts down, I can’t think clearly, I’m depressed, and I just don’t want to be around people. And those times tend to be when RA symptoms are at their greatest. I’ve learned to be able to tell when mood swings and brain fog are associated with RA. I still remember my general practitioner telling me that my ongoing tiredness may point to something other than just depression. It’s during that time that other symptoms of RA became apparent ultimately leading to a referral to a rheumatologist and treatment. I wish that all doctors had this level of insight because I hate reading about RA patients being dismissed because their symptoms are only “in their head.”

The TNF cytokine blocker called Cimzia that I take has had a huge impact on my mental capacity. The first positive outcome of this drug treatment was a dramatic increase in energy and mental clarity…brain fog disappeared. Physical symptom improvements came later and were more spread over time.

I hope that scientists and doctors continue to investigate the connections between autoimmune diseases and cognitive functioning. Perhaps it will even be used as an indicator of disease activity someday. Most importantly, I wish that all those suffering from RA would not feel guilty about changes in their mental state. Get on a good cytokine blocker treatment, don’t be afraid to take other medications for depression, talk to others, and speak to your doctor.

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[i] http://www.psychosomaticmedicine.org/cgi/reprint/32/3/309.pdf

[ii] http://cat.inist.fr/?aModele=afficheN&cpsidt=13998231

[iii] http://www.neuropsychiatryreviews.com/sep04/sep04_npr_inflammatory.html

[iv] http://ajp.psychiatryonline.org/cgi/content/full/158/3/508

[v] http://www.biopsychiatry.com/cytokinesdep.html

[vi] http://www.biopsychiatry.com/antidepressants-cytokines.htm

[vii] http://www.ncbi.nlm.nih.gov/pubmed/15694227