Posts Tagged ‘remicade’

Perhaps I spoke too soon. Rituxan infusions are supposed to be scheduled two weeks apart and the last one was received two weeks ago today. But today’s infusion was cancelled at the last minute by my rheumatologist due to side effects. Within a day of the last infusion, a series of ongoing migraines commenced. This was accompanied by nausea (I didn’t eat much for several days), achy joints (not the type of pain from RA but more akin to the flu), and just a general blah feeling. In the past I might experience 24 hours of flu-like symptoms but this far exceeded that. There are pre-infusion medications given in an attempt to alleviate side effects. For me these include acetaminophen (tylenol – for which I think the clinic charges $7.00!), 25mg of diphenhydramine (Benadryl) injected into the IV, and 80mg of solu-medrol (a corticosteroid) injected. These premeds did not help this time around.

A similar experience with Remicade infusions and methotrexate injections occurred in that ongoing migraines would result within a few hours or a day after receiving the medication. Working with my neurologist, a slew of prophylactic measures were attempted including promethazine (Phenergan) injections. Nothing seemed to work and the use of Remicade and methotrexate came to an end.

I’ve done well with Rituxan over the past 2.5 years. But it seems lately that the list of potential side effects are coming at me with force. These include infusion reactions, infections, low white blood cell count (my B cells are non-existent), body aches, and aching joints. According to the Rituxan website, one tip for infusions states, “Stay mindful of how you feel—even if you didn’t experience reactions in the past, they may still occur with future infusions. It’s important to tell your health care provider right away about any discomfort during or after treatment.” They also state, “Infusion reactions are the most common side effect of Rituxan treatment. Serious infusion reactions can happen during or up to 24 hours after an infusion. During clinical trials, less than 1% of people taking Rituxan experienced serious infusion reactions.”

A two month delay due to infections will now extend another month until an appointment with my rheumatologist to discuss next steps. Perhaps we’ll try Rituxan once again. Or maybe it’s time to move on to another treatment although the options are getting slim. Oh well…think I’ll go fishing tomorrow!


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ACR 1I recently had the privilege to attend the annual meeting of the American College of Rheumatology. Considerable time was spent in the exhibit hall since, in addition to presenting a research paper, I was also volunteering at the booth of the Rheumatoid Patient Foundation.

The exhibit hall was overwhelming and the cavernous room was dominated by pharmaceutical companies. There were dozens of exhibits from large to small companies including, but not limited to, the following who provide many of the major biological treatments for RA:

ACR 2These pharmaceutical companies commanded the majority of the space and had professionally designed exhibits replete with multimedia presentations, large colorful signs and displays hanging from the ceiling, leather lounge chairs, espresso bars, snacks, colorful print materials, conference rooms, and an army of 20-30 sales representatives each. The rumor floating around was that these traveling exhibits cost upwards of $100,000 each in addition to the staff and other associated costs. They replace them every year. It is evident that the big pharmaceutical companies, especially those with expensive biological drugs on the market for RA, have vast amounts of funds to spend on sales and these exhibits. Based on this level of spending, it is obvious that this is big business and it is important for these companies to interact with the doctors and other health care providers who attend this conference in an effort to increase the sales of their drugs.

I enjoyed free espressos from Genentech/Roche each day – the manufacturer of my current RA medication Rituxan. One day while drinking my coffee and looking over research materials on Rituxan, a sales representative approached me obviously expecting me to be a doctor. I told her that I was a patient advocate who was actually taking Rituxan. She literally took a step backwards and told me that she was sorry and hoped I felt better. I laughed and said thanks and grabbed some print materials on clinical trail results and side effects. This awkward moment drove home the potential disconnect between the company sales force and patients. In spite of this brief and awkward interaction, the pharmaceutical companies must be commended for several things.

ACR 3Most of the research and development (R&D) behind these biological treatments for RA were paid for by the pharmaceutical companies. Oftentimes, the basic research, paid for by government or private foundation money, starts with a university-based researcher. These basic ideas lead to potential new treatments and the drug companies take over the onerous and lengthy task of developing and trying out new drugs. For biological drugs, this process may take years. And for every drug that makes it to market, there may be dozens that fail. Such development processes are extremely expensive and those costs are passed onto the patient in the cost of the drug. During the conference I was able to speak with several companies about RA treatments that are in Phase III Clinical trails (the last phase before seeking government approval). The concern is about who is going to pay for the R&D once pharmaceutical companies go over the so-called patent cliff in the next few years when their patents run out and they start to loose market share and profits.

Another patient benefit provided by the pharmaceutical companies for expensive biological treatments for RA are co-pay assistance plans. All of the companies listed above have such plans and they pay out millions of dollars each year helping patients be able afford treatments that can cost between $16,000 – $40,000 a year. This assistance, while extremely beneficial to those who need it, also demonstrates the large profit margins built into the “retail” costs of the drugs.

During the conference, I also met several consultants who are contracted by pharmaceutical companies to conduct research related to patient reactions and opinions about their products. While one may cynically infer that the companies are simply trying to increase their market share by pressuring the patients to ask for their drug, it was clear from the consultants that they genuinely want to increase the positive interactions between patients and the pharmaceutical companies in an effort to improve patient care and future drug development.

Yes, pharmaceutical companies are huge for-profit entities with a major goal of making money for shareholders. And the companies with major biological treatments for RA make enormous profits (Humira sales alone for the 4th quarter of 2012 were $2.7 billion). But they also bear the brunt of the R&D process, help with co-pays, and appear to seek patient interaction. As the patent cliff approaches, time will tell how it will impact these companies and the future of RA drug development.


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For those who live with type I diabetes, injecting insulin multiple times a day becomes a regular routine. But rheumatoid arthritis patients are also likely to face using needles to administer a variety of medications.

After receiving a diagnosis, there is a progression of RA treatments recommended by the American College of Rheumatology (ACR)[i] that usually begin with chemical-based disease modifying drugs (DMARDs) like methotrexate, sulfasalazine, leflunomide (Arava), and hydroxychloroquine (Plaquenil). All of these drugs are available in pill form. Even though available in pill form, many people cannot tolerate the side effects of the most commonly used DMARD, methotrexate, as it is prone to cause nausea. Methotrexate is also available in an injectable liquid form and many rheumatologists will prescribe this form when side effects can’t be tolerated. If this is the case, the patient must learn to self-inject…

…Read more at http://rheumatoidarthritis.net/living/prepare-poked-needles-ra-treatments-go-hand-hand/

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Ever since the H1N1 swine flu scare a few years ago, I make it a point to get a flu vaccine every autumn. When receiving a regular physical exam from my general practitioner last week, the doctor suggested that a pneumococcal polysaccharide vaccine be added…

To check out the rest of this post, go to the newly launched website rheumatoidarthritis.net. I will be writing posts for this site periodically as a Patient Advocate and will continue to make regular posts at this personal blog.

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Twelfth_century_headache_-_geograph_org_uk_-_456584Monday afternoon was spent receiving a Remicade infusion. No, it was not regularly scheduled infusion- it was moved up two weeks as my rheumatologist increased the frequency to every 4 weeks and increased the dose from 300mg to 500mg. This is due to the fact that the Remicade/methotrexate combination does not seem to be having the desired impact on RA as evidenced by increased joint pain/swelling, fatigue, and continuously high C-reactive protein tests over the past few months. After trying multiple treatment regimens over the past five years, this result does not surprise me and I knew that the adjustment was coming. Given past experience, I also knew that the chance of getting a “killer” headache after the infusion was high.

My rheumatologist has been working with a neurologist to tackle the headaches. The neurologist mentioned that at the basic level, many headaches are caused by some type of inflammation (see this overview) and he suspects that my body is reacting to the medications in a negative way. There is research to support the idea that inflammatory cytokines including tumor necrosis factor (TNF) may be implicated in causing migraines (see this review of research). Furthermore, it is suggested that anti-TNF medications may be beneficial in treating headaches although no data currently exists to support this notion (for example, see Bo, et al, 2009). But in fact, just the opposite seems to be occurring with some patients taking anti-TNF medications like Humira and Remicade. TNF inhibitor medications used in inflammatory autoimmune diseases are associated with causing headaches. Read any medication guide for these class of biological medications and you’ll see that headaches are one of the most commonly listed side effects (for example, see the FDA guide for Remicade).

My neurologist indicated that two ways to treat headaches include abortive – knock it down after it starts, or preventative-stop it from happening in the first place. I keep a small pill box of sumitriptan (Imitrex) handy at all times in case a bad headache sneaks up on me. I also take a very low dose, 10mg daily, of nortriptyline as a preventative. This old class of tricyclic antidepressant is also noted as helping manage pain and many rheumatologists use it for fibromyalgia and RA. But the “big guns” come out at the time that I receive an infusion. Last month I was given an injection of 150mg of solu-medrol (methylprednisolone) corticosteroid as a powerful anti-inflammatory headache preventative. The nurse slowly injects it into the infusion line and I could feel a tingling move up my arm, my heart rate increase, and a blast of energy come out of nowhere. Just for perspective, the first day on a Medrol dose pack (see my last post) is a total of 24mg of methylprednisolone. 150mg is a high dose of steroids coming all at once! Forget getting any sleep that evening as insomnia is a classic side effect. Last month the solu-medrol injection seemed to help prevent Remicade-induced headaches. But within two hours of receiving the 500mg dose of Remicade on Monday, a massive headache bore down and lasted for the next 24 hours (of course, the lack of sleep probably didn’t help). Two days later it still feels like I received a big butt whipping.

Side effects are one of many reasons that RA patients stop taking medications. Uncontrolled and debilitating headaches certainly are causing me to think carefully about what’s going with my treatment regimen. I can still recall a month or so early last spring when I stopped Actermra infusions and was waiting to start Remicade infusions. It was a wonderful time as my mind was clear and I had no headaches. Yet, the RA was not under control. While taking no treatment for a while helped reduce headaches, the alternative of receiving permanent damage and disability from uncontrolled RA sounds even worse. Of course, my RA is not under control right now anyway!

Creative Commons photo credit: http://www.geograph.org.uk/photo/456584

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In my last post, I briefly discussed how various metabolic systems are involved with RA and how something called Metabolic Syndrome is more common in RA patients and is implicated in increased risk for cardiovascular disease. A recent article written by Spanish researchers (Amaro, et al., 2013) provides an excellent overview of the connection between metabolic syndrome and rheumatoid arthritis. They stated that metabolic syndrome is characterized by high blood glucose, low HDL cholesterol, high triglycerides, obesity, and hypertension. Up to 39% of RA patients display symptoms of metabolic syndrome placing them at greater risk for cardiovascular diseases. They noted that something called insulin resistance is connected with RA, increased inflammation, cardiovascular disease, and type II diabetes. According to the U.S. National Institutes of Health,

“Insulin resistance is a condition in which the body produces insulin but does not use it effectively. When people have insulin resistance, glucose builds up in the blood instead of being absorbed by the cells, leading to type 2 diabetes or prediabetes.”

A review of research conducted by European rheumatologic researchers (Amaro, et al., 2011) connected insulin resistance to RA. They revealed that insulin resistance was more common in RA patients with higher inflammatory blood markers (c-reactive protein, ESR) and disease activity measured by the DAS28. In addition to helping curb joint destruction, these researchers also noted that the use of biologics that impact inflammatory cytokines, primarily the TNF inhibitors (e.g. Humira and Remicade), may benefit those with insulin resistance. For RA patients on TNF inhibitor treatment, improvements were seen in the insulin resistance in multiple studies over the past few years. In summarizing the topic, Amaro, et al, concluded,

“The role of chronic inflammation is becoming more and more important in the development of atherosclerosis. Likewise, the latter seems increasingly important as a determinant of mortality in patients with RA. In light of the observations, there seems to be ample evidence supporting a relationship between insulin resistance, inflammation and RA, as is also the case in other chronic diseases. In addition, such insulin resistance plays an initial role in vascular damage and appears to be (along with other mechanisms such as endothelial dysfunction, cellular adhesion, etc.) a link between inflammation and atherosclerosis. For all these reasons, rheumatologists should know insulin resistance better, become familiar with its concepts, learn how to measure it, relate it to other disease parameters and consider it as a another systemic manifestation of patients with RA.”

If you have RA, it is a good idea to pay attention to metabolic systems since you are at an increased risk for insulin resistance, increased inflammation, and cardiovascular disease. Below are some strategies that will likely benefit all RA patients.

  • Speak to your rheumatologist about this topic.
  • Get your lipids checked out. Traditional cholesterol tests do not provide enough detailed information. It is important to know LDL levels (“bad” cholesterol), HDL levels (“good” cholesterol), triglycerides, and insulin resistance. There are newer tests like the nuclear magnetic resonance (NMR) lipoprofile test which provides detailed information about the number and type of LDL particles. It also calculates an insulin resistance score. Ask your doctor to order this test. It’s not that expensive and most insurance companies cover it.
  • Watch your diet in terms of refined sugars and starches which rapidly increase blood glucose levels, cause insulin levels to spike, and add stored fat to the midsection. Such a diet increases the chances of developing insulin resistance. This is especially true for RA patients given the inflammatory connections. It is proposed that balancing low fat proteins with whole grain carbohydrates and small amounts of quality fats is the best diet for those with metabolic syndrome (see The Insulin Resistance Diet book by doctor and registered dietician Hart and Grossman for an excellent overview). In general, a low carb diet is suggested to lower levels of inflammation (see Forsythe, et al., 2008).
  • Exercise if possible. You don’t need to be a long distance runner or champion body builder. It is believed that muscle resistance exercise is better for insulin resistance as it burns excess glucose in the bloodstream (see this article).

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struktura infliximabu

struktura infliximabu (Photo credit: Wikipedia)

It is becoming increasingly clear that a substantial proportion of RA patients fail to respond to the more common treatment regimens including combinations of DMARDs (methotrexate, Arava, etc.) and TNF inhibitors (Enbrel, Humira, Remicade, etc). As recently noted by researchers,

“However, about 20% to 40% of patients treated with a TNF inhibitor fail to achieve a 20% improvement in American College of Rheumatology criteria, and more lose response over time (secondary failure or acquired therapeutic resistance) or experience adverse events following treatment with a TNF inhibitor.” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2669237/)

The television advertisements in the United States for these drugs show happy, active people. It is heartening that many RA patients receive excellent results from DMARDs and anti-TNF medications. But I seem to have found myself in the 20-40% group of non-responders. Apparently there is a name for this…Refractory RA.

Refractory in the medical sense means “resistant to treatment or cure” (http://www.merriam-webster.com/dictionary/refractory). According to the National Institutes of Health,

“Refractory disease is defined as failure to attain a predefined target, which is now accepted to be remission or, at least, a low disease activity state.” (http://www.ncbi.nlm.nih.gov/pubmed/21570496)

Since remission is embedded within this definition, it must be clearly operationalized. The predefined target for remission of RA is from the recently revised ACR-EULAR criteria. In order to be technically in remission,

At any time point, patient must satisfy all of the following:

Tender joint count – equal or less than 1
Swollen joint count – equal or less than1
C-reactive protein – equal or less than 1 mg/dl
Patient global assessment – equal or less than 1 (on a 0–10 scale) (p. 581)

These are the stringent criteria applied for clinical trials of newly developed drugs. But applied to currently approved drugs, do patients on these drugs reach remission status? In a review of several studies, the use of traditional DMARDs like methotrexate result in between 35-65% of patients reaching remission. Other comparison studies demonstrated remission rates within a range of 24% with methotrexate alone to 64% with Humira. In one recently published study in China, only 25% of patients achieved remission status using the ACR-EULAR criteria. Many of the remission rate studies were conducted using the old criteria before 2010. Whatever standard is used, it is clear that there are a considerable number of patients who are not in remission.

Biological medicines that are not in the TNF inhibitor class like Xeljanz, Rituxan, and Actemra, are commonly recommended for refractory RA (see studies linked to each medicine above). In the United Kingdom, failure of TNF inhibitors leads to a recommendation to use Rituxan (see http://guidance.nice.org.uk/TA195). But these “second tier” biologicals don’t always result in patients reaching remission status. All one needs to do is read the prescribing information for each of these drugs to quickly realize that many patients in the clinical trials did not reach ACR-EULAR remission status. This is actually the case for all approved RA drugs.

Rheumatology researchers in Portugal recently stated,

“During the last decade we have experienced exciting developments regarding the approval of new treatment options but few patients are reaching sustained remission and refractory patients continue to be a problem. Thus, it is critical to understand how clinicians can decrease the risk of refractoriness by closely monitoring disease activity, using well defined and accepted composite measures, and by early and optimized use of DMARDs, including biologics.” (http://www.ncbi.nlm.nih.gov/pubmed/21570496)

This quote sums up the problem which remains. A large proportion of RA patients who are currently on biological and DMARD medication combinations do not achieve remission status – they have Refractory RA. This evidence lends credence to the fact that more work needs to be done in order to develop treatments that result in true remission. Ultimately, a cure should be the goal for this insidious disease.

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