Posted in Uncategorized, tagged Abatacept, Adalimumab, enbrel, humira, infusion, Orencia, RA, rheumatoid arthritis, treatment, Tumor necrosis factor-alpha, Tumor necrosis factors on June 25, 2012 |
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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.
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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Any RA patient can relate to the consternation felt every day when laying out the assorted pills and medications for daily consumption. This feeling was exacerbated within the last couple of weeks when a sinus infection decided to pay a visit. A headache around the eyes just wouldn’t go away. At first this was attributed to a reaction to Orencia since the headache began within hours after the last infusion. Such headaches were common in the past and usually went away after 24 hours. The experience was the same with Humira injections. But this time the headache persisted to the point where Tylenol and tramadol just weren’t making a dent in the pain and the big guns, oxycodone left over from a recent ankle surgery, had to be pulled out one evening. It finally dawned on me that it could be a sinus infection as the symptoms included the constant pain around the eyes and nose, stuffy nose, post nasal drip, and pressure in the ears. A trip to the local urgent care at ten at night – a visit which took 1.5 hours – confirmed these suspicions. Amoxicillin was added to already crowded medication regimen (think horse pills) along with Afrin nose spray, and neti pot flushes twice a day. Hoping to stem the tide of inflammation in the sinuses (and joints for that matter), a daily dose of 4mg of methylprednisolone (a corticosteroid) was added on a short term basis. After 5 days it was evident that the Amoxicillin was not doing the trick so a visit to my general practitioner doctor was in hand. At first he questioned why the urgent care doc gave Amoxicillin and not Augmentin. He also wondered if the problems were allergy induced until he noticed swollen lymph nodes under my jaw. He suggested one of two actions – try a second antibiotic or get a sinus CT scan. We agreed on the second antibiotic and levofloxacin (Levaquin) was prescribed. It was interesting that the pharmacist made a point to come over and talk to me about this antibiotic and point out some of its issues indicating that it was a strong medication. Upon opening the prescription information at home, the first line was a “black box” warning that read…
Fluoroquinolones, including LEVAQUIN®, are associated with an increased risk of tendon rupture or swelling of the tendon (tendinitis) in all ages. This risk is higher if you are over 60 years of age, are taking steroids (corticosteroid drugs), or if you have a kidney, heart, or lung transplant.[i]
This just wasn’t going to work since I already had 3 ankle surgeries where the Achilles tendon was torn. My rheumatologist told me several years ago to never take ciprofloxacin which was prescribed for a bladder infection. Come to find out, Levaquin and cipro are part of the same family. This stuff was not going into my body. A call to the general practice doctor was made. He acted surprised at my hesitancy to take it and said that the risks were slight. I told him what the rheumatologist said. He relented and prescribed doxycycline. While not as strong as levofloxacin, at least it was something different than amoxicillin. After being prescribed three different antibiotics, the symptoms seem to finally be subsiding. It feels like the merry-go-round is starting to slow as evidenced by the fact that the morning handful of pills and other treatments is diminishing. But then I wondered if it was wise to go ahead with next Monday’s Orencia infusion since increased infections are a side effect. A call was made to my rheumatologist and she said that as long as the antibiotic was finished and symptoms better, go ahead with the infusion. My rheumy deftly pointed out this merry-go-round at my last appointment…”you take strong medicines to combat the RA and then take other medicines to counter the side effects.” At least the Arava (leflunomide) she prescribed last month doesn’t seem to be causing any major side effects yet!
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Posted in Uncategorized, tagged autoimmune, Autoimmune disease, cytokine, enbrel, HLA-B27, Human leukocyte antigen, humira, immune system, inflammation, remicade, rheumatoid arthritis, rheumatologist, TNF blocker on June 14, 2012 |
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My curiosity about genetics and RA was peaked again today when I saw a post on the Facebook page of the American Autoimmune Related Diseases Association (AARDA). A publication from 2004 suggested a possible genetic link between an immune response to tuberculosis over the past few hundred years and autoimmune diseases including rheumatoid arthritis.[i] The notion is that survival of bacteria-induced tuberculosis resulted in the genetic selection of proteins connected with RA including TNF-alpha and HLA. In other words, people that survived tuberculosis had the genes to produce more of these proteins. And people whose genes resulted in the production of certain proteins resulted in more cases of RA. While the exact causes of RA are complex and not entirely known, this study lends more evidence to the notion that there is an underlying genetic connection. Some evidence also exists for environmental and even bacterial triggers for RA (see my earlier posts). Most scientists believe that RA is caused by both genetic and environmental triggers.
For anyone on Humira, Enbrel, or Remicade, TNF-alpha should be familiar since those biological medicines work to block TNF-alpha in the biochemical processes. TNF alpha is a cytokine (protein) that causes inflammation. People with RA and other autoimmune diseases show an overproduction of TNF-alpha. Thus, blocking TNF became a recent mainstay in the treatment of RA.
The human leukocyte antigens (HLA) are a group of genes on chromosome 6 that are connected with the immune system.[ii] There are many autoimmune diseases connected with HLA genes and a scientist in the UK maintains a website is devoted to the topic – http://www.hladiseaseassociations.com/. Multiple HLA genes are connected with rheumatoid arthritis including HLA-DR4 and HLA-DRB. While HLA genes are commonly connected with RA, some scientists demonstrated that other genes also play a role.[iii] One gene called, HLA-B27, is associated with ankylosing spondylitis (AS), an autoimmune disease that impacts the spine, hips, and ankles. I tested negative for this gene several years ago although my rheumatologist noted that some of my symptoms resemble AS. But not all people with AS have the gene and not all people with the gene have AS.
My rheumatologist really grabbed my attention recently when she suggested that I participate in a genetic study since I display symptoms of multiple autoimmune diseases along with mixed genetic and blood tests (rheumatoid factor positive, HLA-B27 negative). Consumer-based companies will conduct basic genetic testing for a cost (e.g. https://www.23andme.com). Kelly at RA Warrior wrote an informative blog about consumer testing last year. I would prefer to engage in a scientific study and I plan to raise this topic at my next doctor appointment. Stay tuned for test results!
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At a recent visit to my rheumatologist, she mentioned that I should participate in a genetic study. This comment was made in relation to a conversation we were having about my displaying symptoms of both rheumatoid arthritis and ankylosing spondylitis. Behind this comment was the fact that every rheumatology patient seems to present symptoms differently and blood marker tests don’t always tell the complete picture. The idea is that more genetic testing is needed in order to better understand these diseases and to develop better treatments. This notion piqued my curiosity given my experience with RA coupled with my science background.
The very next week, I was fortunate to have the opportunity to tour a biotech research facility called the Institute for Systems Biology (ISB) which was founded by Dr. Leroy Hood. Hood was the pioneering scientist who invented computerized gene sequencing machines that enabled the unraveling of the human genome and forever impacted biomedicine and scientific forensics.[i] Today there are numerous scientists attempting to move towards a comprehensive approach to medicine based on genetics and biological systems. The goal is that eventually every person can have a detailed genetic sequence which is used to help with healthcare decisions. Even now, individuals can send in a tissue sample to have their genetic profile examined (for example – https://www.23andme.com). Dr. Hood recently coined the term P4 Medicine[ii] which is described as follows:
Healthcare is on the verge of a major revolution. The existing disease industry servicing passive patients with products and procedures based on large population averages was a monumental industrial age achievement; but this industrial age healthcare model has now reached the point of diminishing returns. P4 Medicine – i.e. medicine that is Predictive, Preventive, Personalized and Participatory — is emerging out of the convergence of systems biology, the increasing activation of networked consumers and the digital revolution in communications and information technology.[iii]
Anyone with RA can relate to feeling like a passive patient and being treated as averages. Diagnosis criteria and treatments are based on averages. Whatever works for the most is what is prescribed. But genetics and technology put us on the verge of busting out the pitfalls of the current system.
Anyone with a chronic disease is quite familiar with the current healthcare system that includes general practice physicians, specialist physicians, nurses, nurse practitioners, pharmacists, physical therapists, medical assistants, billing personnel, scheduling assistants, insurance providers, and numerous others. Oftentimes these people and their organizations don’t communicate well with one another. Each clinic has separate databases that houses detailed medical records. Insurance companies maintain comprehensive records on each patient but those records focus primarily on official diagnoses and treatments as related to billing. This disjointed system contains many roadblocks and is not designed with the patient’s best interest at heart.
I dream of the day when healthcare is predictive using genetics to determine the propensity for certain diseases thereby leading to preventative measures. Imagine knowing about a set of genetic markers for rheumatoid arthritis and then being able to receive treatment to prevent its insidious impact on the body. With each individual’s differences, detailed genetic information could lead to more personalized treatments. How many RA patients experience going through a litany of various chemical and biological treatments over the years? Having access to a complete, individual genetic sequence, coupled with technology based information and social networks would allow patients to become more participatory in healthcare decisions. During the tour of ISB’s facility, I was told of one local physician’s reaction…”This means that the way we currently do medicine is going to have to dramatically change!” Oh yes it will!
While all of these changes may not happen in my lifetime, I’m going to begin the process by asking my rheumatologist about participating in a genetic study.
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Posted in Uncategorized, tagged achilles tendon, ankles, antibody, biologicals, bone erosion, diagnosis, enbrel, fatigue, hope, leflunomide, rheumatoid arthritis, rheumatologist, TNF blocker on June 6, 2012 |
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I’ve been absent from this blog for almost 1 ½ years, I decided to jump back and start writing again. And much has transpired since the last post. After stringing it out as long as possible, I had my third ankle surgery in late November 2011. The orthopedic surgeon cleaned up bone erosion on the top side of the heel bone, removed a bone spur poking into my Achilles tendon, removed a bursa sac, and repaired mores tears in the Achilles tendon. Tissues samples were sent to pathology and the lab results noted bone erosion and inflammation caused by rheumatoid arthritis.
Stopping Humira injections in early November 2011 was necessitated by the pending ankle surgery but also by the fact that it just wasn’t helping that much anymore. In addition, a 3 cm swollen lymph node in my armpit needed to be checked out. Short story – saw a great oncologist and after many blood tests, an ultrasound, and a CT scan with iodine contrast, everything came back negative with no lymphoma! One interesting blood test result was that I had a positive Rheumatoid Factor test for the first time. I was finally seropositive and felt like I was no longer the seronegative stepchild of RA. Although I know that upwards of 30% of folk don’t have positive RA blood tests.
I was started on Orcenia infusions in January 2012. I was done with TNF blockers after using Enbrel, Cimzia, and Humira. After insurance approval, I had three loading doses every two weeks before moving to a regular schedule of once a month. Having a nurse administered infusion at a clinic was a new experience compared to self-injections of Enbrel and Humira. It was a rough few months but I began to get back some energy and have less joint pain and stiffness.
By this point, I decided to pursue a new rheumatologist. I had been with my original rheumatologist from the beginning and he made the initial diagnosis. But over time I began to realize that it was time for a change. I sought out a new rheumy by asking around, checking out published lists of top doctors in the region, and looking at patient reviews online. A choice was made and an appointment with a new rheumy scheduled. As an added advantage, her clinic just relocated to a brand new, clean, and cheery building. I had all medical records sent to her.
The first appointment was a pleasant experience from the beginning with smiling staff, caring nurses, and the fact that I didn’t have to wait. The first thing the doctor told me was that she spent considerable time reading all of my medical records. That was a refreshing to know – she already had an idea about my case before I arrived. She then asked me to tell my story in my own words. Given my history, my new rheumy suspects that I may have a combination of RA and ankylosing spondylitis – an autoimmune condition which commonly affects ankles, hips, and backs. She joked that I would be a good subject for genetic testing! We discussed how Orencia was working and she felt like I would benefit from the addition of a disease modifying drug (DMARD). Since methotrexate and I didn’t have a good relationship a few years ago, she wanted to try leflunomide (Arava). In fact, she suspects that one reason that TNF blockers stopped working was that I wasn’t on combination therapy resulting in the building up of antibodies to Enbrel and Humira. I appreciated her optimism about being able to help and compassion about my experiences.
New adventures lie ahead with a new doctor, new medicines, and new possible side effects. But hope springs eternal just like the sun finally coming out in Seattle.
Photo taken by my daughter on a sunny day in Puget Sound.
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