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With RA, routines are a necessary fact of life in order to function. But those routines may get pushed aside for various life events. Traveling is one of those times. I’m currently on a trip to Orlando, Florida for a work related conference. Many friends and colleagues in Seattle expressed jealousy at the notion of escaping winter and heading to a sunny climate. But for me, RA adds many dimensions that makes it difficult to travel to the point where it’s hard to enjoy the pleasures associated with travel. On the way out the door, my wife wished me well and that the RA would not kick back at me too hard. Below are some strategies that may help while traveling with RA.

1. Check bags instead of carrying them on the plane. It may cost a baggage fee but this avoids the extra work on your joints from hauling and lifting heavy objects.

2. Take an extra supply of medicines. Several weeks before leaving, check your supplies and refill prescriptions. You never know if you’ll get stuck in an airport or need to spend a few extra days due to unseen circumstances.

3. Pull out the “big gun” medicines and bring them along just in case they are needed. For me, this includes Vicodin for pain and Ambien for sleep. I store these in a safe at home and rarely use them but you never know when they may be needed.

4. Carry medicines with you on the plane just in case you need them or your luggage gets lost. I use pill boxes which I label for each medication because they take up less space than the original pharmacy bottles.

5. For those on a biological treatment or injectable methotrexate, extra planning may be needed. If you self-inject on a regular basis, your next injection may fall in the middle of the trip. You will need to carry-on your meds in a cooler, plan for cold storage upon arrival, and include alcohol swabs and other related items. While using Enbrel and Humira, I used a nice little cooler pack that the makers of Enbrel sent me. Extra foam was added to the inside and I used one of the ice packs that the pharmacy used to ship the medicine. The syringes or injector pens can be kept in a water proof zip lock bag. I kept the medicine cold for over 8 hours on one trip using this technique. Most hotel rooms have refrigerators that can be used for storage until the day of injection but it’s a good idea to check ahead of time. One time while taking Cimzia I was traveling for the holidays. The specialty pharmacy directly shipped the syringes to my in-law’s house. Not only was this convenient, it became an educational tool for my extended family since they were able to see what the treatments were like. If you are on an medicine administered via infusion, schedule your infusions around the trip.

6. On long flights, get up and stretch those stiff, achy joints from time to time.

7. While traveling for either pleasure or business, it’s easy to overdo it so schedule times of rest and avoid pushing yourself. While on this short four day trip, I plan to treat myself to some sun at the pool at least once (see photo). Don’t feel the need to attend every conference session, side tour, family outing, late night dinner with the gang, etc. Know your limits and stick to them.

8. Eat healthy foods and drink plenty of liquids. This is sometimes hard to do but helps keep your body functioning as well as possible.

The longer I have RA, the less inclined I am to travel. But sometimes it can’t be avoided. Now I need to go give a presentation at the conference followed by some more sun!

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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!

Andrew

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

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8198569526_3f28555551Having gone through a slew of treatments options for rheumatoid arthritis in the past four years, it’s easy to begin to feel like a failure especially as I read about other fortunate RA sufferers who receive great benefit or even remission from first line medications like methotrexate and TNF blockers such as Enbrel and Humira. This feeling was exacerbated today when staying home because I felt too bad to go into work. In a period of no less than one hour, four commercials for Orencia and Humira came on the television (oh, as I was writing this sentence, a fifth commercial just came on!). These commercials show healthy, happy, and energetic looking people engaged in all types of activities that may be difficult for those with RA. Funny thing is, both of these medications failed to bring much impact let alone remission to me. I’m not alone as researchers discovered that 30% of patients on TNF blockers fail to reach even the minimal threshold for efficacy.[i] For some, including myself, there is some initial positive response but the impact diminishes over time. And for others, negative side effects or a reaction to the drug prevents them from taking it any longer.

After trying a boatload of RA treatments, I’m off to try a combination of RA medications that tend to be reserved for “failures” like me! My insurance approved Actemra in a fairly short time period – six days! I will have my first infusion tomorrow afternoon. According Genentech’s website,

“Actemra is the first humanized IL-6 receptor-inhibiting monoclonal antibody approved for the treatment of adult patients with moderately to severely active RA who have had an inadequate response to one or more disease-modifying antirheumatic drugs (DMARDs).”[ii]

And the American College of Rheumatology repeats this “failure” mantra…

“Tocilizumab has been approved by the Food and Drug Administration (FDA) for use in patients with rheumatoid arthritis who have active disease despite having been treated with one or more of five other biologic modifier drugs that block another cytokine, tumor necrosis factor (TNF), or who have been unable to tolerate such drugs.”[iii]

The good thing is that I should know fairly quickly if it is working since it is reported to start working within a few weeks.[iv]

The other medication that I started taking today is azathioprine (trade name Imuran). Once again, it appears that this drug, originally designed as an immunosuppressant for organ transplants, tends to be reserved for RA patients who do not respond or cannot take other more common DMARDS like methotrexate and leflunomide (Arava).[v]

Rheumatoid arthritis affects everyone differently as do the various treatments. This is evident in the many new medications being tested (see earlier post) and the recent approval of Xeljanz. I just have to keep reminding myself that I’m not a failure and that some combination of treatments will work! I’ll write a post about tomorrow’s Actemra infusion.

Creative Commons Photo Credit: http://www.flickr.com/photos/quinnanya/8198569526/

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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.

Orencia

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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