Posts Tagged ‘Abatacept’

4880117233_085f24e9b3_nThe sun was out in full force in Seattle today. In fact, it’s been a good week of sunshine and the extended forecast is for more sun. It’s a rare event when a high pressure takes control in January and blesses us with extended sunshine and cool, crisp Canadian air. During such events, Seattlites’ behavior changes with more energy, outdoor activities and improved moods. The snow speckled Cascade and Olympic mountains are visible making a nice contrast in colors. Mt. Rainier, that 14,400 foot volcano, shows itself to the south. We know that the weather won’t stay this way forever as the usual pattern in the winter is clouds with only periodic sun-breaks  But we know that spring and summer are coming with wonderful weather and a beautiful landscape.

This experience is much like living with rheumatoid arthritis. It’s been a long and draining “rainy season” as various medications failed to provide relief. I’ve tried various DMARD and biological treatments (Enbrel, Humira, Cimzia, Orencia) over the past four years. There were times of relief and times of bad flares. The past year seemed particularly bad as the combination of Orencia and Arava failed to make much of a dent in RA symptoms. After an extended time period like this, I begin to forget what it’s like to be “normal”. In December I began a new combination of Actemra infusions and Imuran as a DMARD. After about 2-3 weeks I began to notice a change. By the time of the second infusion I felt about 30-40% better. Two months into this treatment I feel like I haven’t in several years! I have almost a full day of energy, sleep is more restful, joint pain is reduced, and stiffness decreased. I forgot what it was like to feel this way. The sun is shining at the moment and I’m going to take advantage of it because you never know when the clouds will roll back in. Those clouds could be a failure of the medications over time, side effects, or long term tissue damage not stopped by the treatment.

Actemra acts on Interleukin 6 which is a unique cytokine that has a dual role in the immune system as both anti and pro-inflammatory. It’s also the first biological that raises the cholesterol levels of some patients and we’ve already noticed a spike in my recent blood test. Dietary changes were in order…watch fat and cholesterol consumption, eat foods that lower LDL and raise HDL, and exercise. I haven’t been able to exercise in almost three years. But this week I felt good enough to start some low level sessions on our elliptical.

I have hope that this combination will provide strong and long term relief. For the time being, I’m enjoying this time of sun-breaks. But with RA, those hopes are always tempered by the reality that RA is a sneaky beast.

Creative Commons Photo Credit: http://www.flickr.com/photos/okadayoichi/4880117233/

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As the New Year comes upon us, it’s time to reflect on the previous year and consider the upcoming
year. Here is a summary of topics from this blog – both general and personal.

  1. A third ankle surgery and other RA symptoms was the straw that broke the camel’s back on being physically active. My snow skiing days seem to be over but I won’t give up fishing.
  2. I went through a variety of medicines this year. It began with Humira, then Orencia for 11 months, and ended with Actemra in the search for a treatment that would work. In terms of DMARDs, I stopped using Arava and am now taking Imuran. I’m not alone because many RA patients experience the same search for the right treatment.
  3. I experienced receiving monthly infusions in a clinic. The process is not bad, the nurses are knowledgeable and nice, and I’m pretty well off compared to the some of the cancer patients in the clinic.
  4. Biological treatments are crazy expensive and I’m so thankful for health insurance.
  5. RA and its treatments bring about many side effects. The immune suppressing drugs contributed to recurring sinus infections and ultimately, sinus surgery.
  6. A change in rheumatologist was the best decision made in years. Lesson learned – don’t always go with the first doctor you find and spend time seeking out recommendations, patient reviews, and nominations by regional media for best doctor awards
  7. I met many other bloggers who struggle with RA. A close relationship and support system exists among the RA blog community and I’m very thankful for these friends.
  8. Misinformation and incomplete information about RA continues to pervade media. We must continue to work at advocating for RA patients.
  9. This blog was listed as one of the best 22 RA blogs by Healthline and summarily nominated for their best health blog of 2012.
  10. The first new oral medication for RA, Xeljanz, received approval by the United States Food and Drug Administration.
  11. There are numerous new biological treatments for RA in the clinical trial pipeline bringing the possibility of new treatment options.
  12. Much research continues into the genetic and biochemical processes involved with RA which may eventually lead to better treatments or even a cure.
  13. Autoimmune diseases including RA, while impacting a large proportion of the population, continue to receive a disproportionate amount of research funding when compared to cancer and heart disease.
  14. While the currently available biological treatments for RA bring much needed relief, they do not work for approximately 20-40% of RA sufferers.

Thanks to all those who took time to read and comment on this blog. I wish everyone a wonderful and healthy 2013!


Creative Commons Photo Credit: http://www.flickr.com/photos/sally_12/2154575545/sizes/m/

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Measurement of Erythrocyte Sedimentation Rate ...

The answer to this question eluded me over the years with the wide variety of RA medicines I’ve taken. It came up this week when my wife asked it again after seeing me go through a particularly long and nasty flare. I reminded her that there is no cure, only treatments for RA. But it did raise my curiosity.

In an attempt to answer this question, I went back to the Orencia package insert[i] – those 20 page, 5 point font documents that every pharmaceutical company puts inside their medicines – to try to find some answers. Bristol Myers Squibb likes to include a copy of these inserts every time they send me something in the mail. Most people probably don’t read these lengthy, highly technical documents that include information on dosage, indications, administration, warnings, side effects, and efficacy. There are likely some regulatory guidelines from the government dictating their contents since at the bottom of the document it says, “The Instructions for Use has been approved by the U.S. Food and Drug Administration”.  I dug through the insert until finding the section on clinical response – in other words, how well does it work?

Most clinical researchers use a variety of tools to gauge RA drug efficacy. The Health Assessment Questionnaire – Disability Index (HAQ-DI) which is a short version of the full HAQ is one such measure.[ii] Here’s a link to an online version of the HAQ. Many rheumatologists have their patients complete a HAQ and I remember doing this at my very first visit. Another commonly used tool to assess is the Disease Activity Score 28 or DAS28. It uses a count of the number of tender and swollen joints plus either a sedimentation rate (ESR) or c-reactive protein (CRP) blood test of inflammation. There is also an online version of DAS28 and an app for the iPhone. According to one site, “A DAS28 score higher than 5.1 is indicative of high disease activity, whereas a DAS28 below 3.2 indicates low disease activity. A patient is considered to be in remission if they have a DAS28 lower than 2.6.”[iii]

According to the online DAS28, I currently have high disease activity. One of the clinical studies on Orencia reported in the insert, “…a greater proportion of patients treated with ORENCIA plus methotrexate achieved a low level of disease activity as measured by a DAS28-CRP less than 2.6 at 12 months compared to those treated with methotrexate plus placebo.” The proportions reported were 41% of patients on Orencia/Methotrexate reached a DAS28 of less than 2.6 compared to 23% of placebo patients. That means that a larger proportion of patients, 59%, did not reach remission.

I’ve been on Orencia plus Arava for 11 months now and am not currently in that minority who reached remission. In fact, just the opposite has happened. It’s hard to tell at this point if this combination of disease modifying drugs is not working for me or it’s just a nasty flare induced by too much work in the past few months. But this will be a conversation my rheumy and I will have at our next visit in early December. I am very hesitant to try yet another treatment regimen as I’ve already been through a truck load. But my rheumy encouraged me there’s still hope and other treatments to try and her goal is remission.

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I’ve been on four biological medicines over the past 3 ½ years to treat rheumatoid arthritis. I’m thankful for these complex drugs as it’s clear that they slowed disease progression. I’m currently taking Orencia. After a recent Orencia infusion, my insurance company sent an Explanation of Benefits (EOB) form showing the cost and coverage of the medicine and infusion services (see a photo of the form). The form shows that the charges billed by the infusion clinic for the Orencia was $4,425 for 1,000 mg of medicine. I’m curious about the source of this cost and can only assume that this is the cost suggested by the drug manufacturer Bristol-Myers Squibb…sort of like a “suggested retail price.” The adjustments made by the clinic were for $2,609.25 making the final cost of the drug that the insurance company agreed to pay $1,815.75. The mark-up on Orencia must be huge if the adjustment was almost 59% less than the original cost. Insurance companies obviously know the price structures to medicines and know what price pharmaceutical companies and clinics will actually accept in order to cover their costs. The clinic also charged $367 for the infusion which included the nurse and equipment. My insurance company agreed to pay $260 for these services. The total cost of this infusion was $2,076.29. A total annual cost of such infusion treatments would be $24,912. And that does not include other costs associated with my RA treatment including other medicines, doctor visits, blood tests, imaging, and surgeries.

I had already met my deductible for the year so there were no out-of-pocket expenses this time. However, pharmaceutical companies know that deductibles and co-pays can present huge financial challenges to patients and many offer co-pay assistance. Bristol-Myers Squibb provides an assistance plan where they will pay all but $5 of each infusion co-pay costs (just for the medicine, not the clinic costs). They actually sent me a debit card and loaded it with “cash” ready to be used to pay the clinic any co-pays not covered by insurance. I used this card to pay for thousands of dollars of co-pay costs to the clinic during the first six months of the year.

Biological medicines are understandably expensive because of the complex manufacturing processes involved. Such medicines also have extended patent protection over chemical pharmaceuticals in order to help drug companies recoup the extensive cost of research and development. Those costs are passed onto the patient. Every time an Orencia commercial comes on the TV, I wonder about the cost of publicity – a relatively new thing in the pharmaceutical industry.

The wild difference in charged costs versus covered costs as shown on the EOB can only make one wonder about drug company profit margins. Clearly biologicals are big business. In 2010, Amgen’s Enbrel had over $3 billion in sales just in the United States.[i] This represented 23% of Amgen’s annual sales. Humira is projected to be the world’s biggest revenue drug by 2016 with over $10 billion in annual sales.[ii]

The real cost of Orencia isn’t a mystery that I will likely solve any time soon. There are numerous business and political players involved. I’m just thankful for a medicine to treat RA, insurance coverage, and co-pay coverage by the pharmaceutical company.

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Most RA patients get to experience a wide variety of medications. Ask any long term patient and they can reel off a long list of medications tried and failed only to move onto the next experiment. Many RA bloggers include a diary of medications – past and present. This is because there is no cure for rheumatoid arthritis and current treatments are designed to either modify the biochemical processes causing the destructive symptoms or to provide relief of the symptoms. Disease modifiers (DMARDs) include chemicals like methotrexate, plaquenil, sulfasalazine, and Arava (leflunomide). They can also include biologicals like Enbrel, Humira, Remicade, Orencia among others. Symptom relievers may include prednisone and NSAIDS.

My experience is much like other RAers as I’ve been through a wide variety of medications (check out the My Meds page). In addition to 6 months of Orencia infusions now increased to 1000mg, Arava was added about 6 weeks ago. Combination therapies are the standard and research bears out that patients do better when a disease modifying chemical is added to a biological. This is the reason my rheumatologist recently added Arava. I couldn’t tolerate methotrexate, the most common DMARD. While I know that many do well with it, I never felt worse in my life when on methotrexate. The problem is that the DMARDs are strong chemicals which bring a whole host of side effects. It seems that many RA patients take additional medications just to combat the side effects. For example, folic acid and stomach acid blockers are common amongst methotrexate takers.

Arava, common name leflunomide, is newer than methotrexate and the safety profile is still emerging. While generally well tolerated, there are cases of numerous side effects ranging from mild to life threatening. I’ve been on Arava for almost 6 weeks starting with a 10mg daily dose. At that dose, side effects were pretty much non-existent after the first day but so was its impact on RA. This week the dose was increased to 20mg daily. My rheumatologist noted that my blood tests were doing well and wanted to increase the dose in an effort to more effectively impact RA symptoms. The day the dose increased, side effects became much more noticeable and include numerous gastrointestinal issues (I’ll spare the details). But at the same time, I began to notice RA symptoms beginning to diminish. It was with some hesitancy that I took the Arava pills this morning. After taking my other pills, the Arava sat next to a glass of apple juice for a while while contemplating what it was doing to me. Yes, I liked its impact on RA. No, I did not like the side effects. The pills were finally downed with trepidation wondering what side effect experiences would come. As the day progressed, I noticed that the side effects were much less than previous days. Perhaps my body was getting used to it. Time will tell. In the meantime, I’ll take the benefits of Arava and continue to monitor the side effects.

Photo Credit – Wikimedia Commons http://commons.wikimedia.org/wiki/File:Complete_GI_tract_-_transparent_-_wider.png

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Today was a scheduled Orencia infusion. I began this medication last January after Humira stopped working. Orencia is different than Humira and Enbrel, the most common biological medicines for RA, in that it is designed to inhibit T-lymphocyte cells in the immune system while Humira and Enbrel block TNF-alpha. It’s usually used as a second line biological treatment if TNF blockers don’t work.

The treatment begins with three loading sessions every two weeks and then moves to once a month infusions. For my weight, the normal dose is 750mg. However, my new rheumatologist wanted to up the dose to 1,000mg as it wasn’t having the full anticipated impact and some recent research shows that an increased dose is beneficial for some patients. She also added 10mg of Arava (leflunomide) in an effort to combine a disease modifying drug with a biological.

The morning began like any other day except that I tried to keep myself hydrated and I took some Tylenol and 50mg of Tramadol before leaving the house. This was an effort to keep headaches at bay since I’ve experienced them after infusions in the past. I also had similar reactions with Humira injections. I recently switched rheumatologists at a new clinic. Orencia must be administered in an infusion clinic and this would be my first visit. The infusion clinic is on the 5th floor of a brand new building and is near the Oncology offices. That is because many cancer patients are receiving chemotherapy via infusion. It feels a little strange walking into such a place as you know that many of the patients around you are in serious and life threatening situations. The clinic itself was bright and cheery with small and private cubicles for each patient. Unlike other doctor offices, you just walk in and immediately meet a nurse who escorts you to a cubicle.

Once settled into a comfortable lounge-like chair, blood pressure measurements were taken and then an infusion needle was inserted into a vein. I’ve had infusions in my elbow, arm and hand. Today the choice site was the hand. The stick began with a slight sting that then grew more painful to the point of major discomfort. The nurse said that there are many nerve endings in the back of the hand and that the needle must be irritating them. She placed a warm compress on the site but the pain was almost unbearable. She offered to re-stick me but the pain subsided a little. Four vials of blood were drawn as is typical with each infusion. These samples will be used to run typical RA blood tests like complete blood count (CBC), sed rates, and liver panels all in an effort to make sure that everything is normal since the array of RA medicines can impact these markers.


Infusion Pump

The medicine is contained in a solution and is infused, not dripped, meaning that a pump provides the force pushing it into your body. The pump makes a whirring sound every few seconds. At this point, I could pull out my iPad, listen to music, and read a book. For Orencia, the infusion takes about 45 minutes. That’s not bad compared to 3-4 hours for Remicade, another TNF blocker used for RA. When the medicine is gone out of the bag, a beeping on the pump alerts the nurse. Some saline solution is pushed through the drip line to flush all of the expensive medicine into your body. I can always feel a cold sensation in my arm during this time. Finally, a pressure bandage is wrapped to keep the site from bleeding and they advise leaving it on for 30 minutes.

View of Space Needle from Gates Foundation

It’s all over in a pretty short period and after setting up an appointment for the next infusion, I’m out the door. Today I was fortunate enough to be able to meet a friend for lunch. He works at the Gates Foundation – the largest non-profit in the world. I was able to put the infusion behind and take a tour of the amazing, environmentally friendly building before enjoying some sushi. There was no headache today and for that, I’m thankful. But the real story will be if Orencia impacts RA symptoms over the long term.

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