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Posts Tagged ‘energy’

medrolRA created a desperate situation. Joint pain, stiffness, and swelling are at high levels. You know it’s bad when one can notice swelling in a skinny knee (just ask my wife about my bird legs). My rheumatologist commented the other day, “your hands feel hot today” intimating that inflammation was busy at work. Energy levels are such that simple daily tasks like cooking dinner are difficult. Cognitive functioning is so impaired that tackling issues at work and home are close to impossible (missed work…that’s another issue for another day). Systemic inflammation seems to running rampant – a recent C-reactive protein test was near an all- time high for me at 1.6 mg/dl and it’s been this high for the past four months. Tweaks to long term treatments are yet to show an impact.

It’s hard to believe but I actually asked my rheumatologist for steroids in an effort to knocks things down a notch. If you’ve read this blog over the past few years, you know that I’m not a big fan of corticosteroids (see earlier posts on Prednisone Side Effects, Love/Hate relationship,  and  my first post on the subject where I compared them to Nuclear Weapons). A stash of prednisone pills sits in my bin of prescriptions but it is avoided like the plague as the side effects often feel worse than the RA. My rheumy recommended something different and I agreed to try a Medrol Dose Pack which contains a batch of 4mg methylprednisolone pills titrated down over a period of days (see photo). I only had one experience with this approach back in 2008 when first diagnosed. These dose packs are used to treat a variety of inflammatory conditions (see package insert).

The first day brought a welcome burst of energy, much lower joint pain, an ability to focus, and the recurring headaches disappeared. It felt wonderful. Then it came time to sleep and it was clear that wasn’t going to be easy as my body and mind were both hyped up. An Ambien (zolpidem) sleeping pill was used to help which it did. Day two didn’t bring the same levels of energy and joint relief and I collapsed in a puddle left wondering if it was worth it. The next few days will serve as an experiment to see if rampant inflammation from the RA can be wrestled into submission by this powerful drug. If not, I’ll just have to wait to see if long term treatments will start working. After being through so many treatments over the past few years, my rheumy actually used the term “refractory RA” with me the other day which doesn’t engender much hope. In the meantime, I’ll seek any relief from any front including the corticosteroids I love to hate.

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The last four days have been a grand time of celebrating our oldest son’s college graduation. It’s been a whirlwind of events including his senior engineering project presentation, three formal ceremonies of various sizes and durations, dinners, and a large party hosted at our house. This meant much physical activity around the yard and house the principal of which was 10 hours of smoking five large pork shoulders for 50 people (it was tasty and you should check out the website http://www.amazingribs.com/).

Tired_brown_bear_050701_01Going into this set of events, a nagging thought persisted…”I’m going to pay for this later.” Sure enough, by Sunday evening I could barely walk, my fingers were swollen and throbbing in pain, and sheer exhaustion washed over my body causing me to collapse. I knew that going to work Monday morning would not be possible.

Many argue that movement and exercise is critical medicine for arthritic joints stating that it relieves pain and stiffness (see these websites – Mayo Clinic, NCHPAD). In addition to potential positive impact on joints and muscles, exercise is obviously important for other reasons include cardiovascular and mental health. But my experience over the years has been that exercise and movement causes rebound pain and stiffness. Yet, I know that I’m missing out on the benefits of exercise.

It’s interesting to read some of the recommendations from medical websites. From WedMD…“Regular exercise can actually reduce overall pain from rheumatoid arthritis.” In my experience with RA, exercise always causes more pain. There are many times when I’ve had to stop movement because the pain got worse. WebMD also makes this statement, “Regular exercise improves functional ability and lets you do more for yourself.” This may be true for some but the functional ability of my ankles and Achilles tendons actually got worse after exercising. The tendons tore at a quicker rate and my orthopedic surgeon and physical therapist both recommended that I avoid any activity that puts stress on the tendons.

Can exercise actually be contraindicated for RA? Kelly Young at RA Warrior has an excellent series of posts about this topic. She concludes, “If you can, you should; if you can’t, you shouldn’t.” At the Health Central RA website, Dr. Borogini wrote a balanced article about the topic and makes an excellent suggestion which is in alignment with Kelly Young’s statement, Rest More When RA Is Active, Exercise More When It Is Not. The Johns Hopkins Arthritis Center website makes a great observation about movement and RA.

Acutely, resting of involved joints can assist with pain management and decrease the inflammation of the involved joint. However, the potential side effects of inactivity include decrease range of motion, loss of strength, altered joint-loading response, and decrease aerobic capacity.

This leaves those with active disease in a real quandary.

The conclusion that must be drawn from the recent set of weekend experiences is that my RA is not under control and I should probably avoid strenuous physical activity. But of course, I already knew that going into the weekend. The difficulty lies in the fact that life must go on and I was not about to miss this once-in-a-lifetime celebration. I just have to be ready to pay the consequences afterwards.

Creative Commons Photo Credit: http://commons.wikimedia.org/wiki/File:Tired_brown_bear_050701_01.JPG

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Gardening has been a favorite outdoor activity for years. This love of the ground and raising plants began in 6th grade when I dug up a spot in our yard and planted a vegetable garden. Tomatoes grew like weeds and the joy that came with watching and nurturing plants sank deep in my psyche like tap roots.

As a twenty something high school teacher, summers were spent operating a small landscaping business. I had a truck and hired several high school students as laborers. We would plant shrubs and trees, build retaining walls, and haul bulk items like top soil, rock, and mulch. During this phase of life, I also regularly ran 20-30 miles per week and participated in 5Ks periodically. I never felt better!

527053415_e5df73b495Every home we lived in over the years would get hours of loving care in terms of landscaping and gardening. Redoing lawns, building greenhouses, planting flowers, edging and mulching planting beds, planting trees and shrubs, and building fences (see photo) were just a part of life.

Thirty years later and living with rheumatoid arthritis has dramatically changed these activities. This fact was recently evident when my wife started edging a planter bed and digging up sod in order to plant new flowers photoand lay mulch. In the past, I would’ve been in the thick of this kind of work. She began the digging knowing that I couldn’t help. We were delighted when our wonderful neighbor came over and started helping edge and pulling up sod. Instead of just passively standing by watching someone else do the work, I decided to work on bonsai gardening. The kind of work needed to maintain bonsai – pruning, watering, etc. – is doable given the impact of RA on my joints and energy levels. My dwarf Cedar of Lebanon and Western Red Cedar bonsai seem to be doing very well (see photo).

I can no longer dig sod or haul mulch, but I can still get my hands dirty and nurture plants – just on a much smaller scale!

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Actemra graphI started Actemra infusions in early December 2012. After trying four biological treatments over the past four years – Enbrel, Cimzia, Humira, and Orencia – I tried not to get too cynical about the potential outcome. At the same time Actemra infusions began, my rheumatologist put me on a different DMARD – azathioprine or Imuran. We started at the lowest possible dose of each – 4mg per kg of body weight of Actemra for monthly infusions and 50mg a day for azathioprine. A dramatic impact began about 3 weeks after the first infusion. The change was almost overnight. Within a 24-48 hour period, my energy levels skyrocketed and joint pain diminished. My wife immediately noticed the change for the better. Sleep was more refreshing, the ability to do work increased, stiffness was almost non-existent, and I wasn’t a slug by dinner time. A real treat was the three times I got on our elliptical to exercise for 20 minutes – it had been almost four years since I last exercised!

But as quickly as the amazing results came on, they began to fade away. By the time of the 3rd infusion, I was almost back to the place where I started. Energy levels and lack of joint pain were tracked on a scale of 1-10 and the graph pictorially depicts the results. At the same time this was occurring, we noticed a dramatic increase in cholesterol levels and blood pressure which coincided with the start of Actemra. According to the Actemra prescribing information, increased cholesterol and hypertension are common side effects.

My rheumatologist is a very knowledgeable and compassionate doctor. Her goal is remission and she will try whatever it takes to get there. While driving to an appointment this morning, I began to wonder if I had seen the last of Actemra. The choices are getting slim – really only Rituxin and the newly approved Xeljanz. But she said that I was on the lowest dose of both Actemra and azathioprine. So, we’re doubling down on both in an effort to recapture those golden moments experienced in January. We’ll try 100mg of azathioprine daily and 8mg per kg of body weight of Actemra infusions monthly. Of course we’ll continue monitoring cholesterol and blood pressure. I’ll keep plotting the results and see the outcome of this latest experiment.

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Having RA brings about many different feelings, reactions, emotions, etc. Lately, in the middle of a particularly nasty flare, it’s become increasingly harder to get going and move around. The best analogy that comes to mind is of a deep-sea diver with lots of weight attached to your body. I’ve never dived before but can imagine that all that weight, the added water pressure of being deep undersea, breathing limited by the special gas mixtures, and the movement slowed by water makes one move incredibly slow.

Waking up in the morning may take 2-3 hours. Often times I will wake up at 5-6 a.m., stumble downstairs in the dark, take my daily prescribed pills, grab something to eat, then find myself on the coach wrapped up in a blanket and falling back to sleep until 8 or 9. Once getting up to really start the day, things move pretty slow. My head feels groggy from poor quality sleep and maybe even from side effects of various medications. Everything takes a little extra time while the joints loosen up. Forcing oneself to get going is a daily struggle. Sometimes inertia gains the upper hand and as Isaac Newton said, “a body at rest remains at rest”. Getting 6-8 hours of productive time represents a good day. Pushing beyond that, which is tempting with a type A personality, only results in feeling worse.

At least today offers an opportunity to work from home and slow down a little bit. But I’m tempted to dive in full bore and seek all of the “adventures” that lie before me. But I must pull back and move slowly with all of the “weight” attached.

Creative Commons Photo Credit: http://www.flickr.com/photos/usnavyseabeemuseum/6847212397/

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Life and work doesn’t seem to slow down and take notice of RA. It’s been a couple of weeks where keeping the head above water is a struggle. Two major reports due, teaching a class of smart graduate students, and preparing for a research presentation are causing my head to spin, work 12 plus hour days, and RA to raise its ugly head. While life goes on, RA doesn’t seem to take notice and give you a break. In fact, just the opposite happens. During times like this, the mental and physical stretching causes RA symptoms to multiply with more joint pain, increased fatigue, and lower sleep quality. Why can’t RA play nice!?

Focusing on the light at the end of the tunnel brings some hope coupled with the fact that my research presentation is in Florida next week…think sunshine, pools, good food, and palm trees. Of course, traveling across 3 time zones and staying in a new place brings it’s own set of RA-induced issues. Sometimes I wonder how or if this sort of increase in work pressure, even if it is not long term, can be maintained while battling RA. At least my RA treatments seem to be working to some degree for now and I have symptom checker medicines for pain and inflammation. I just have to keep from getting stretched too thin that I snap!

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Creative Commons Photo Credit: http://www.flickr.com/photos/dno1967b/7753069168/

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Towards the end of a whirlwind of recent travels, a never ending headache set in. Many factors historically caused me headaches including migraines, stress, and reaction to medications (see earlier post re. Humira). When I was driving home from work yesterday, I began to connect together a set of other symptoms…constantly clogged left side of nose, pressure around my left eye, pain on the molars on the left side, and a recent spate of colds that made the rounds with my children. A sinus infection seemed to be the culprit. By Friday afternoon, the medical options are pretty slim but I swung into the local urgent care. Surprisingly they were not busy and within a few moments I was diagnosed with a sinus infection. I was prescribed the fast acting antibiotic Azithromycin and I coupled that with a decongestant and a neti pot to cleanse the sinuses. Upon waking this morning, the headache and pressure was gone and it remained that way all day!

As an autoimmune disease, RA is treated by medicines that suppress the immune system. If the immune system can be suppressed, then it will be less likely to attack itself and the symptoms of RA can be controlled. Drugs used to treat RA like methotrexate and the biologicals are immunosuppressant drugs. I’ve been on an immunosuppressant for the past 1 ½ years…Enbrel, Cimzia, and now Humira. According to Humira’s website,

HUMIRA is a TNF-blocker medicine that can lower the ability of your immune system to fight infections.” [i]

Before starting on a biological, a negative tuberculosis test is required. Upper respiratory infections, including sinus infections, are first on the list for common side effects for Humira.[ii] This isn’t my first infection while being on a biological medicine. I had a urinary tract infection about 8 months ago and had a couple months of swollen lymph glands around my neck which was attributed to some unknown infection (likely viral). Lower on the list of side effects are cancers like lymphomas. Although it’s easy to get freaked out by such statements and decide not to take a biological treatment for RA, the chances for this occurring are very low and the benefits outweigh the risks for most people.

On one hand, I’m thankful for Humira and its impact on treating my RA. I’ve had pretty decent energy and bone erosion in the fingers seems to be halted (see earlier post). (Although I’m starting to debate Humira’s effectiveness because of ongoing problems with my ankles. It’s just impossible to tell what things would be like without Humira). On the other hand, I don’t like the fights with infections that are likely caused by having an suppressed immune system. There always seems to be a set of tradeoffs when it comes to the imperfect science of medical treatments.

 

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