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Posts Tagged ‘Cancer’

The Ice Bucket Challenge for ALS is all the rage right now. Hardly a day goes by that I don’t see a post on my personal Facebook page with someone pouring ice over his or her head and daring someone else to do it. It seems that every celebrity is getting on board ranging from Bill Gates to Lady Gaga. To date, over $22 million has been raised by this strategy.[1] This got me thinking about why RA and related autoimmune diseases can’t get this sort of public attention.

Amyotrophic lateral sclerosis (ALS) is also known as Lou Gehrig’s Disease after the famous baseball player. According to the ALS Association, 5,600 people are diagnosed with ALS each year in the United States and it is estimated that 30,000 some people currently live with the disease.[2] It is true that half of all people diagnosed with ALS will die within a few years and it is a most devastating disease.

However, the impact of RA on Americans is vast compared to many other diseases. Over 1.5 million Americans suffer from rheumatoid arthritis and upwards of 23 million suffer from an autoimmune disease.[3] Arthritis is the leading cause of disability and work limitations in the United States. The financial impact on the workplace and personal lives of those affected is close to 100 billion dollars annually. There are over 10,000 arthritis related deaths every year. [4] The direct healthcare costs of autoimmune diseases are estimated at $100 billion annually compared to $57 billion annual for cancer.[5] Autoimmune diseases receive much less research funding annually than cancer – about $800 million dollars in research funding every year compared to all cancers funding at $7 billion.[6]

There are many diseases worthy of public attention and research funding. And ALS is certainly one of those. But I am frustrated by the lack of public attention and funding for autoimmune diseases in general and RA specifically. Can’t someone come up with a promotion for RA that will grab the public’s attention?

[1] http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-081914.html

[2] http://www.alsa.org/about-als/who-gets-als.html

[3] http://www.aarda.org/autoimmune-information/autoimmune-statistics/

[4] http://www.cdc.gov/arthritis/data_statistics/arthritis_related_stats.htm

[5] http://www.aarda.org/autoimmune-information/autoimmune-statistics/

[6] https://livingwithra.wordpress.com/2013/01/31/research-funding-priorities-for-rheumatoid-arthritis/

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My rheumatologist reiterated with me yesterday that I have a tough to treat case of RA – called refractory RA. She displayed disappointment that all of the treatment plans we’ve tried over the years have not had the intended impact. We’ve cycled through four TNF inhibitors (Enbrel, Cimzia, Humira, and Remicade), Orencia, and Actemra. And that’s in addition to various DMARDs including sulphasalzine, azathioprine, and leflunomide (Arava). The reasons for stopping the use of these drugs runs the gamut of lack of efficacy to intolerable side effects. My doctor was apologetic, felt bad I wasn’t helped by all of the treatment plans, and genuinely expressed concern for the impact RA has had on my life recently. But I reassured her that I trusted her medical judgement and that the impact comes over time allowing time to adjust. I appreciated her empathy and deep desire to help.

We discussed the few remaining options which includes Xeljanz, Kineret, and Rituxan. Xeljanz (tofacitinib) was approved in the United States but not approved in Europe. We both felt that more data was needed on this “oral biologic” before giving it a try. Kineret, or anakinra is a biological response modifier that targets interleukin 1. My rheumy said that is not used that much anymore because of more effective options. A recently published report indicates that a Swedish company just purchased the rights for Kineret from biological pharmaceutical giant Amgen. Such a move seems like Amgen is dumping the drug likely because it is not profitable and is moving onto other new drugs. After much discussion, we both agreed to try Rituxan and I will continue to inject 20mg of methotrexate weekly. 

As I was describing my new treatment regimen to friends and family, I found myself trying to explain the drugs, how they are administered, how they act to treat RA, and the possible side effects. As I read more about these drugs, it struck me as interesting that both medicines were originally developed to treat certain forms of cancer. Methotrexate is a chemotherapy drug developed in the 1950s and is still used to treat forms of leukemia, breast cancer, lung cancer, non-Hodgkin lymphoma, and head and neck cancers (see American Cancer Society). It stops the growth of cancer cells by affecting their metabolism. Given the immunosuppressing nature of methotrexate, it is now commonly used in lower doses to treat various autoimmune diseases including rheumatoid arthritis. It’s also used to treat tubal ectopic pregnancies by inducing abortion. In spite of the low doses used in treating RA, some of the chemotherapy side effects remain including hair loss and nausea. This paints a picture of a rather toxic medicine! But I’ve been injecting 20mg weekly for some time now and seem to tolerate it rather well.

Rituxan is also known by the names MabThera and Rituxamab. This monoclonal antibody is a biological medicine that was originally developed in the late 1990s to target the protein CD20 present in certain phases of B lymphocytes. It was originally approved for the treatment of B cell related lymphomas and leukemias (see the Rituxan website). In the early 2000s, it was shown in clinical trials to be effective in treating rheumatoid arthritis and gained FDA approval for use in refractory RA cases in 2006. The involvement of B cells in autoimmune diseases likely led to the investigation of Rituxan as a treatment for RA. The side effect profile appears similar to other biologicals but with some additional infusion side effects requiring some pre-medications along with a few more rare serious infections.

The use of cancer drugs to treat RA points to the connection of both diseases to the immune system. It also demonstrates the serious nature of RA. Given the fact that both methotrexate and Rituxan were originally designed to treat certain cancers, and that they are now secondarily being used to treat RA, may point to the fact that a much larger proportion of research funding goes to cancer (see this earlier post). While I don’t mind receiving the “leftovers” or being an “afterthought” if the medicines effectively treat RA, the ideal would be for the development of new treatments or even cures specifically designed for the processes involved in autoimmune diseases. In the meantime, I’ll go to the infusion clinic and begin Rituxan infusions along with cancer patients and see if it can take care of this refractory case of RA!

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626px-Michael_Ancher_001I’m currently sitting in an infusion center getting a dose of Actemra. This is a double dose, 640mg, as the single dose did not appear to be working well for me. My rheumatologist decided this action based on several key factors. It’s been a rough couple of months as I’ve experienced an increase in joint pain and swelling, been constantly tired, and lacked energy and motivation. Many of the patients around me in the infusion center are cancer patients who are receiving chemotherapy. As I look around at these folk, it is clear that they have some of the same symptoms.

This recent episode caused me to investigate why I felt so bad and I stumbled upon something called “sickness behavior”. The best way for the general population to understand this feeling is to think about what it’s like while fighting an infection like influenza or pneumonia. In summarizing the source and symptoms of sickness behavior, researchers stated,

“It was subsequently shown that physiological concentrations of proinflammatory cytokines that occur after infection act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue.”[i]

According to researchers at the University of Illinois, it was reiterated that sickness behavior can be brought about by pro-inflammatory cytokines. They stated,

“The behavioral repertoire of humans and animals changes dramatically following infection. Sick individuals have little motivation to eat, are listless, complain of fatigue and malaise, loose interest in social activities and have significant changes in sleep patterns. They display an inability to experience pleasure, have exaggerated responses to pain and fail to concentrate. Proinflammatory cytokines acting in the brain cause sickness behaviors.”[ii]

The same cytokines that are involved in autoimmune diseases like rheumatoid arthritis – TNF alpha, Interleukin-1 (IL-1), and Interleukin-6 (IL-6) – are implicated in sickness behavior.[iii] Increased levels of these cytokines are observed in patients with RA. In one study, sickness behavior was even observed in volunteers who received a typhoid vaccine which increased the levels of IL-6 in the blood.[iv] The same symptoms are observed in patients with diseases that involve the immune system such as AIDS, coronary heart disease, cancer, systemic infections, etc.[v] People might act like such symptoms are “all in your head” but there are biochemical reasons behind these symptoms.

This brings me back to Actemra. It is designed to block the signaling processes of IL-6 which are thought to be overactive in RA patients. If IL-6 can be blocked, then symptoms of RA such as joint destruction can be controlled. In addition, Actemra may assist with reducing fatigue experienced by RA patients.[vi] All of this makes sense in light of the sickness behavior theories discussed above. My rheumatologist once told me that the first sign that a biological treatment was working was a patient experiencing more energy.

Within the first month of receiving Actemra infusions, my energy levels skyrocketed and joint pain was reduced. But that experience was short-lived. I’m hoping that the double dose brings a return of that wonderful feeling. In the meantime, I just feel sick!

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