Posts Tagged ‘chronic’

Money_closeupThere are many diseases in the world that impact people’s lives. According to the United States Centers for Disease Control (CDC), the most common chronic diseases include heart disease, cancer, stroke, arthritis, and diabetes.[i] It is estimated that over 12 million Americans have some form of cancer[ii], 25 million with diabetes[iii], and 25 million with diagnosed heart disease[iv]. The CDC also claims that,

Arthritis is the most common cause of disability, with nearly 19 million Americans reporting activity limitations.[v]

Of course, those 19 million Americans include people with the more common osteoarthritis which is caused by mechanical processes in the joints and is usually associated with age. It is estimated that rheumatoid arthritis, an autoimmune disease which can strike all ages, impacts over 1.5 million Americans.[vi] Of the 81 million Americans diagnosed with one of the major chronic diseases noted above, all forms of arthritis accounts for 24% and rheumatoid arthritis (RA) accounts for almost 2% of the population This prompted me to investigate research funding priorities.

The National Institutes of Health (NIH) is the federal government agency designated by the United States government to address health research and policy. According to their information,

The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services , is the nation’s medical research agency—making important discoveries that improve health and save lives. More than 80% of the NIH’s budget goes to more than 300,000 research personnel at over 2,500 universities and research institutions. In addition, about 6,000 scientists work in NIH’s own Intramural Research laboratories, most of which are on the NIH main campus in Bethesda, Maryland.[vii]

The NIH awards billions of dollars every year for research into a wide variety of health related issues. Dr. Francis Collins, the famous scientist who led the Human Genome Project, is the current NIH Director. Funding from the NIH does not include research funding in other countries, research funded by corporations like pharmaceutical companies, or research funded by non-profit organizations or foundations. Clearly, pharmaceutical companies have large research and development departments whose goal is to develop new drugs and bring them to market for profit purposes. Non-profit agencies such as the Arthritis National Research Foundation (http://curearthritis.org/) dole out donated funds to researchers. The Bill and Melinda Gates Foundation is the largest private foundation in the world and one of their areas of emphasis is global health. But their main focus is on infectious diseases, family planning, and nutrition in developing countries.[viii]

NIH data can provide some measure of the emphasis put on various diseases. The NIH publishes annual lists of projects funded by disease category.[ix] The grants are awarded competitively – researchers submit proposal and they are peer reviewed for worthiness. According to their report of the latest actual numbers in 2011, the NIH funded $231 million in projects targeted at arthritis which includes osteoarthritis, rheumatoid arthritis, and other related diseases like lupus and gout. Of the numerous grant projects funded in 2011 for arthritis research, some were focused on osteoarthritis and others on RA. It’s a difficult process to wade through the hundreds of projects and some knowledge of the topic would be required to determine exactly which is RA focused. For example, a project called IL-10 Regulates Mast Cell Function and Survival was funded for $354,622 to Virginia Commonwealth University. This is probably RA related because IL-10 is one of the immune system regulatory chemicals involved in RA. The project Attenuation of Pain in Men and Women: Mechanisms of Exercise-Induced Analgesia funded to the University of Wisconsin for $157,028 is related to all forms of arthritis.[x]

The NIH gave another $869 million for projects categorized as autoimmune diseases which includes many diseases other than RA. There are many RA related projects funded in this category such as Effect of Chronic Inflammation on Atherosclerosis Outcomes in RA for $744,283 to the University of Texas Health Science Center. There are many projects funded in this category that are connected to general autoimmune processes that may or may not be involved with RA. For example, the project Innate Immune Signal Transduction Specificity in Inflammatory Disease was funded to Case Western Reserve University for $315,446.

The amount of funding given to arthritis and autoimmune diseases has held steady since 2008. There were some upward bumps in funding in 2009 and 2010 but that is because of extra stimulus funding from the American Recovery & Reinvestment Act. It appears that most disease categories maintained a level of funding over the past few years. There have been no dramatic increases of decreases in arthritis funding by the NIH.

According the NIH report, heart disease received a combined $1.673 billion of funding for 2011, diabetes received $1.076 billion, and all cancers combined received $7.413 billion in grants. Clearly cancer is the top policy priority of the national government. Given the actual impact to populations as a whole and its impact on disability, it seems that arthritis should receive a larger proportion of funding. That case could also be made for heart disease and diabetes. But it is heartening to see a large proportion of funding going to arthritis in general and RA in particular.

Creative Commons Photo Credit: By Pen Waggener (Flickr: Economic Landscape) [CC-BY-2.0

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My wife and daughter were watching the 1985 movie “Anne of Green Gables” the other night when a set of dialogue caught my attention. The adopted Anne faces one trial after another and has a knack for the melodramatic. After one traumatic event, the following was said…

Anne Shirley: Can’t you even imagine you’re in the depths of despair?
Marilla Cuthbert: No I cannot. To despair is to turn your back on God.

It’s quite easy to sink into a pool of despair when fighting a chronic disease like RA. Constant fatigue that beats you down into the couch, joint pain that won’t go away, a never ending litany of new symptoms, side effects from drugs, secondary symptoms, doctor visits, a regimen of treatments, health insurance, missed work, misunderstanding by those around you, and the list goes on. But Marilla’s advice rings true. There’s always hope and the fact that God is there brings comfort and peace.

Right now would be a prime time for me to sink into despair. I face an extensive sinus surgery tomorrow and the recovery will not be pleasant. The chronic sinus infections were caused in part by being immunocompromised by RA drugs Orencia and Arava. During the decision making process, I learned about the procedure, recovery, and potential complications. I probably watched too many YouTube videos showing the surgery. But then I ran across some patient testimonial videos and everyone of them said how glad they had the surgery and what a difference it made in their quality of life. This gave hope with a dream of being symptom free in the sinuses.

The symptoms of RA compounded with the symptoms of chronic sinus infections have not been easy. It is easy to despair at times like this. But I don’t want to take the easy route because it doesn’t lead to anything productive. I can’t turn my back on hope and God.

The surgery is scheduled for tomorrow morning. Monthly Orencia infusions continued on schedule although I was instructed to stop Arava right before the surgery and into the first week of recovery in order to my immune system a better shot at fighting infection. I’ll provide regular updates during the recovery time.

Photo credit: http://commons.wikimedia.org/wiki/File:Green_Gables_(NHSC_chart).jpg

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One thing that RA patients learn over the long run is that there are all sorts of collateral issues that arise from both the disease and the treatments.  Every health care provider I visit, including doctors, dentists, physical therapists, ophthalmologists, etc. is aware of my conditions and treatments. And they understand the wide-ranging impact of the disease. For example, my ophthalmologist is aware of my history of eye inflammation (iritis) caused by RA and he regularly checks for that. He also knows of my medicines and the potential impact on the eyes. My dentist knows that RA patients may suffer gum disease and jaw bone problems. So I have regular cleanings and checkups.

 The strong medicines used to treat RA also cause collateral damage via side effects. My rheumatologist likes to quip “we treat the RA and then have to treat the side effects from the powerful medicines.” But she’s adamant that there is no way she would recommend not treating the RA. The impact of RA without treatment is too great to consider that. A recent side effect battle that I’ve been waging is chronic sinus infections most certainly exacerbated by a suppressed immune system caused by Orencia and Arava. Yes, I had sinus infections over the years probably due to anatomical issues in my sinuses. But the combination of anatomy and a suppressed immune system was too much for me to handle. So, in addition to dealing with RA symptoms, I have to also deal with sinus issues and an upcoming sinus surgery next week.

 All of this goes to demonstrate that RA patients must be persistent in dealing with the primary and secondary issues of the disease and its treatments. It’s a life-long battle and like with any battle, there’s bound to be collateral damage.  

Photo credit: http://commons.wikimedia.org/wiki/File:XM982_Excalibur.jpg

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RA and Life Plans

Cover of "Dan in Real Life"

Cover of Dan in Real Life

There are a set of movies that whenever the chance presents itself, all other things will stop in order to watch them. For various reasons, these movies simply grab my attention and I can watch them over and over again. They run the gamut of drama, comedy, and action and include Shawshank Redemption, Ferris Bueller’s Day Off, North by Northwest, Parenthood, and the newest one – Dan in Real Life.

On a lazy Saturday morning, I found myself watching Dan in Real Life again. Dan is raising three daughters by himself after the death of his wife. He’s struggling with his life and unclear future when a turn of events leads him to meet a woman with whom he falls in love. Things come together and he finds meaning again. Towards the end of the movie, he makes a profound statement, “Instead of telling our young people to plan ahead, we should tell them to plan to be surprised.”

Sure, RA causes changes in life plans…we deal with changes in physical capabilities, mental stamina, finances, energy levels, even damaged bodies. But life in general causes these kinds of changes. We can plan all we want, but “surprises” will come our way. I think what Dan is saying is that we shouldn’t be surprised by the surprises life brings. We should plan as if they are inevitable. Life is not so much what happens to us, but our reaction to it. In midst of exile which brought much pain and suffering, God told the Jewish people, “For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)

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A recent experience got me thinking about autoimmunity once again. Last week a lingering tingling in my hands prompted a call to my rheumatologist. He called back on Friday evening at 7:00 (after most people already called it a work week!) and asked me to come in the following week. After a few minutes in the exam room, he quickly pronounced that I had carpel tunnel syndrome…nerve damage (parasthesia) to the median nerve in the wrist. Although it could’ve been a side effect of taking Humira, the diagnosis was not a much of a surprise as I guessed this was the culprit. Carpel tunnel syndrome is commonly associated with RA.[i]

During the process of the doctor visit, I mentioned to the nurse and doctor that I had lost about 10 pounds in the past few months. For most folk, this would be a welcome thing. But I was not trying to lose weight and nothing else in my life had really changed lately. Unlike the mentioning of a few other symptoms (e.g. a recent flare including increased joint pain), this garnered attention and prompted a slew of questions and digging through the doctor’s notes which included my most recent blood work. The rheumy noted that my glucose level was slightly elevated previously (yes, I remembered him telling me this a few months back). This, of course, turned the discussion towards diabetes. Another glucose test along with a c-peptide test was ordered. He also mentioned thyroid problems as a possibility. My mother had autoimmune hypothyroidism (Hashimoto’s Disease) years ago eventually resulting in the removal of her thyroid. A complete battery of thyroid tests was also ordered. Off to the lab I went for a new blood draw.

While the lab test results are pending and I try to avoid thinking too much about it, I remembered that type I diabetes and Hashimoto’s Disease both have an autoimmune basis (specific organs are attacked in both). My recent set of symptoms may simply be part of RA and I can’t draw any definitive conclusions at this time. I’ve been down this road before as several years ago my first autoimmune symptom was uveitis– inflammation of the eyes. But once again I found myself asking the question, “Why does the body attack itself?” The simple answer is that scientists don’t really know although environmental and genetic factors are implicated (see earlier post on suspected triggers). But once a trigger occurs, the immune system mistakenly identifies your own tissue as foreign and then attacks it (see biochemistry of RA post). There are dozens of autoimmune diseases – rheumatoid arthritis, type I diabetes, lupus, Crohn’s disease, and psoriasis are among the more common. Patients with one autoimmune disease tend to be more prone to get another and there appears to be a genetic disposition.

The American Autoimmune Related Diseases Association (AARDA) is the only non-profit group devoted to autoimmunity. This organization provides a wealth of relevant information and support materials. According to their website, 50 million Americans suffer from an autoimmune disease. That’s about 20% of the population! Below are some surprising statistics about autoimmune diseases that are posted on the AARDA website. I encourage readers to pass this information onto friends and health care providers. The bottom line in my mind…

  • Autoimmune diseases affect large numbers of people
  • The symptoms can be serious and chronic
  • Causes and cures are unknown at present
  • More research is needed
  • There is much ignorance about autoimmune diseases and how they affect people

Autoimmune Disease…is a major health problem.
• Researchers have identified 80-100 different autoimmune diseases and suspect at least 40 additional diseases of having an autoimmune basis. These diseases are chronic and can be life-threatening.
• Autoimmune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years of age.
• A close genetic relationship exists among autoimmune disease, explaining clustering in individuals and families as well as a common pathway of disease.
• Commonly used immunosuppressant treatments lead to devastating long-term side effects.
• The Institute of Medicine reports that the US is behind other countries in research into immune system self recognition, the process involved in autoimmune disease.
• Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients.

…faces critical obstacles in diagnosis and treatment.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed.

…offers surprising statistical comparisons with other disease groups.
• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).
• NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
• The NIH Autoimmune Diseases Research Plan states; “Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery.”
• According to the Department of Health and Human Services’ Office of Women’s Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women’s Health Information Center.[ii]

[i] http://www.webmd.com/pain-management/carpal-tunnel/carpal-tunnel-syndrome

[ii] http://www.aarda.org/autoimmune_statistics.php

Photo Credit Creative Commons License: http://www.flickr.com/photos/feuilllu/

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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!

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 1st – 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

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

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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.

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).

[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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