Posts Tagged ‘Seattle’

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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PIK512x664As I mentioned in an earlier post, it’s oftentimes difficult to validate the barrage of information on the internet about health issues and diseases. There are some trustworthy sites for RA such as the Johns Hopkins University RA site. But much of the information on the internet is designed to provide basic information and not detailed and current scientific and research-based results. I recently found an excellent site that can help fill in these gaps. The Projects in Knowledge program is a continuing education program for doctors that is totally online and freely available to patients and other interested parties. All board certified doctors and other medical practitioners must complete ongoing training to maintain licensure. The Projects in Knowledge provides continuing education for medical practitioners. There are accrediting bodies that oversee these programs thereby maintaining quality, accuracy, and currency. Projects in Knowledge has a specialty devoted solely to RA. The rheumatology section is edited by Dr. Phillip Mease who is a clinician at Swedish Hospital in Seattle and a researcher associated with the University of Washington. Each specialty contains interactive modules, video lectures, readings, and other materials. The content is based on the most current research literature. They also have an iPad app called Rheumatoid Arthritis-A Living Medical Textbook where you can go through each interactive module. Granted, much of the information is highly technical but it can provide an excellent background in RA for those who are interested in learning more. Check it out!

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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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It’s been a busy week with family visiting. There were 12 people in the house for a week with 8 kids ranging from 11 months to 21 years. Ok, the 21 year old only came for a short visit but it was still busy! Since Seattle is a great destination, we kept busy with many activities include a trip to the beach, fireworks, Pike Street Market, Snoqualmie Falls, a Mariners baseball game, and lots of cooking. Being that this kind of schedule was out of the ordinary, I was running on empty all week. Since RA causes fatigue –  the butt kicking kind – I tried to pace myself. But this was difficult given the expectations to be a good host. There were a couple of days where I laid down to take a nap but the hustle and bustle made that problematic. That left sleeping at night as the best option to get rest. Given that you want to spend as much time with family as possible, it was usually late before crawling into bed. By that point I was over tired and my ankles, knees, wrists, and fingers were quite painful from overuse. Sleeping with RA is difficult because joint pain can cause you to toss and turn and wake up in the middle of the night. Sometimes it helps to use a sleep aid like Ambien but that usually only gives me 6-7 hours. I can’t take NSAIDs so pain killers like Tylenol and tramadol can help. Fortunately, things are winding down and I can tell that tomorrow will be a “vacation from the vacation” kind of day and hopefully things will return to “normal.”

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RA is opening my eyes to the complex world of high level, biological medicines. According to one source, the global market for TNF inhibitors (e.g. Enbrel, Humira, etc.) was $13.5 billion in 2008. Understandably, it takes years of research, clinical trials, and approval processes in multiple countries before a new medication hits the market. And recouping those costs is important since the pharmaceutical companies have so much invested. But these dollar amounts amaze me when I consider the exorbitant retail price (about $1,800 a month) and the fact that the FDA gives a 14 year lock on biologicals before making it generic (7 years for other drugs). 

Proteins Layer by kaibara87.

Upon the announcement of FDA approval of Cimzia, a new TNF inhibitor, the stock shares of UCB, the company that produces it, jumped dramatically and they estimate $1 billion profit from the drug in the first year. Now that I’m taking Cimzia, I wondered for a moment if I should rush out and buy stock! But I think I’ll wait until the verdict on its effectiveness on me is in. Clearly, biological medications represent a very profitable business.

I’m convinced that the researchers on the front lines doing the basic lab work have the best interest of suffering patients at heart. Seattle, where I live, is a hub of biotech industry.  The Institute for Systems Biology. the Seattle Biomedical Research Institute (SBRI), the Fred Hutchinson Cancer Research Center, the University of Washington Medical Center, and many others are located here. In my line of work, I’ve had the fortune of getting to know some of these scientists. They are passionate about discovering treatments and cures for diseases. The Gates Foundation, the world’s largest private foundation, is also headquartered in Seattle (yes, the Bill Gates from Microsoft). They made healthcare a funding priority and they pump billions of dollars into research designed to treat and cure worldwide diseases.

In the United States, the National Institutes of Health (NIH) pours in billions of tax dollars into medical research. In 2009, they estimate that $238 million will go into arthritis research. For fun, check out NIH’s list of funding. While $238 million may sound like a lot, it’s a drop in the bucket compared to other categories. I’m glad for this funding but I also know that politics plays a role in this funding.

It also helps to place a human face with this type of research. Bruce Beutler was the scientist behind the development of Enbrel. He is now at the Scripps Institute. Here’s a link to his lab website where you can check out what they’re doing now. I’m thankful for his groundbreaking research that led to TNF inhibitors that are widely used for treating RA today.

I’m still unraveling the systems, funding, political, and business sides of this emerging world. Parts of it make me very glad. Others cause me concern. I most look forward to future research and resultant treatments…and dare I say cures…for RA.

 photo Creative Commons License http://www.flickr.com/photos/kaibara/

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