Posts Tagged ‘fatigue’

Since being diagnosed with RA in 2009, it’s been an interesting process trying to find the right treatment combination. To date, seven biologics and four disease-modifying (DMARDs) medicines in various combinations and dosages have been tried. The DMARDS used in the past include the following:

Sulfasalazine – This was the first DMARD tried after diagnosis. An allergic reaction resulted in severe hives and cessation of this drug.
Methotrexate – Oral pills were used. Unrelenting and unbearable gastrointestinal issues precipitated an end to this trial.
Leflunomide (Arava) – This DMARD did not have much impact on RA symptoms.
Azathioprine (Imuran) – This DMARD did not have much impact on RA symptoms.
Methotrexate – Self-injections were used for the second trial of MTX. Injections were stopped about a year later due to evidence that they were contributing to migraines.

Rituxan (Rituximab) is the latest biologic and I’ve been on it for 1½ years. The typical suggested treatment plan is two infusions every six months but I’ve been on a schedule of two doses every four months. The last infusions were in October and November but it seems that its impact is not just not optimum. Joint pain, swelling, and fatigue are all on the increase and neck surgery six months ago coupled with an elbow surgery in the near future lend evidence that Rituxan alone is not keeping the disease in check. After a discussion with my rheumatologist this week, it was decided that adding another DMARD might help control the disease processes. There aren’t many choices left and my rheumatologist suggested trying Mycophenolate, or CellCept, in combination with the Rituxan infusions.

CellCept was originally developed to help organ transplant patients from rejecting their new organs. It works by suppressing the immune system. Now it’s commonly used to treat lupus but is also used for other autoimmune diseases including rheumatoid arthritis. As with many DMARDs, common side effects involve the gastrointestinal system. Blood counts can be impacted so regular blood tests are conducted. [1] There aren’t many published studies on CellCept although it’s been proposed as an alternate DMARD for those with refractory disease not responding to other treatments. [2]

A new treatment experiment begins. Hopefully it will bring some much needed relief.

[1] http://www.rheumatology.org/Practice/Clinical/Patients/Medications/Mycophenolate_Mofetil_(CellCept)_and_Mycophenolate_Sodium_(Myfortic)/

[2] http://www.smw.ch/docs/pdfcontent/smw-12441.pdf


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Hardly a day goes by on the rheumatoid arthritis Facebook site that a person doesn’t mention their persistent battle with fatigue. It’s one of the most frustrating symptoms of RA and there’s no treatment that directly affects it.

Fatigue is a common problem seen is almost all autoimmune diseases.[1] Your body feels completely wiped out, energy levels are low, it’s hard to move, and your cognitive function is poor.

Read the rest of the article at http://rheumatoidarthritis.net/living/ra-fatigue-complex-poorly-understood/

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I had a follow-up appointment with my rheumatologist to see how the Rituxan/Methotrexate combination is working. Since the time I started Rituxan, an MRI of my right elbow revealed a 50% tear in a tendon and active inflammation in the joint space. A cortisone shot from the orthopedic surgeon seems to have calmed things down for the time being. My right ankle displays regular sharp pain feeling much like it did a couple of years ago when I had surgery to remove bone erosion and repair soft tissue damage. Under examination from the rheumatologist, my toes were tender and painful – something I never noticed since I don’t regularly inspect my toes. I still experience considerable overall stiffness, joint pain, and fatigue. But the good news was that my rheumatologist noticed that I had less tenderness and swelling in my finger joints (it amazes me how she distinctly remembers such things). I agreed as I had noticed the same thing. My wife, one of the best and objective observers, also noticed some improvement over the past few weeks.

When I started other biological treatments, it was pretty clear whether or not it was working within the first few weeks. But that is not the case with Rixutan. Unlike anti-TNF drugs like Enbrel and Humira that can work more quickly, the full effect of Rituximab may not be seen for 16-24 weeks (National Rheumatoid Arthritis Society). My first Rituxan infusion was on September 23rd and I’m sitting at about 11 weeks since I started. According to the Rituxan frequently asked questions (FAQ) website,

At the time of their first checkup—8 weeks after starting treatment—many of those people had seen an improvement in their symptoms. And 6 months later, many were still experiencing improvement.”

The hope remains that this combination will continue to cause an improvement in symptoms. My rheumatologist believes that with the RA out of control for so long, it may take some time for a treatment to catch up and put out the inflammatory fire.

Rituxima Binding to CD20 on a B Cell Surface

Rituxima Binding to CD20 on a B Cell Surface (Photo credit: NIAID)

In this fast-paced, electronic society, we demand everything instantly. It’s difficult to wait for a treatment to take effect. But with the complex biological processes involved with rheumatoid arthritis, the immune system, and Rituxan, we must be patient. While scientists aren’t completely sure about the exact details, it is believed that Rituxan works by depleting the production of B cell lymphocytes by targeting an antigen called CD20 (see graphic) (Pescovitz, 2006). Since B cell production takes time and Rituxan only works on a portion of the production line (see graphic below from the Rituxan website), it stands to reason that it will take time for the therapeutic action to take hold. Slow and steady, hold the course, wait and see…these are all operative words at this time.


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5444096544_b0128da571We make plans for our lives, get used to the regular patterns that develop, and act as though nothing will ever change…then RA throws a curve ball. My RA symptoms have not been under control for sometime now, it’s clear that yet another treatment strategy is going to be required, and the treatment options are getting few and far between. Since RA is getting the best of me lately, something had to give and this past week it became clear after much thought and advice seeking that I could not maintain the same level of work that I have engaged in for so many years (I’m a college professor). I finally approached my boss and told him the situation and asked to be relieved of a large portion of my administrative duties which took up the bulk of my time and energies and instead focus primarily on teaching. He was very understanding, made the adjustments, and handled it with such great grace including even taking on some of the responsibilities himself. Such a change brought about a slew of mixed emotions going from relief to sadness that such changes were even required as I enjoy what I do. To add to the internal emotions, this change necessitated informing many people which of course brought concern and questioning. A huge curve ball was just thrown my direction.

During times like this it’s natural for many questions to arise such as…

  1. Will I be able to continue working in the future or will disability be required?
  2. Will RA ever get under control?
  3. Will more effective treatments or even a cure be developed in my lifetime?
  4. Since I seem to have failed so many treatments, what if I don’t respond to any of the few remaining choices?

But then I realized that life can’t be lived by asking a bunch of “what if” questions. Focusing on such things only leads to stress and turmoil.

In baseball, curve balls present one of the most difficult challenges. Many a fine player can’t make it to the major leagues because of one problem – they can’t hit a curve ball. Give them a typical fastball and they’ll smash it for hits all day long. But once they begin to face higher level pitchers who deliver a nasty curve ball, their hitting goes downhill fast. Former major league baseball player Doug Glanville wrote an interesting article published in the New York Times about hitting curve balls and how it relates to life struggles including his father’s chronic illness. He stated,

“What I found was that your approach doesn’t have to be any different from the one you use when dealing with — indulge me for a second — any other curveball life throws at you. We spend so much time cruising along, looking to hit the straight and dependable fastball, that the audacity of something different can cause us to forget any and every tactic that once gave us comfort and success.”

As he described his dealings with his father’s illness, he intimated that he had to roll with the changes and adjust as needed.

“I had to learn to approach this one with no bat and with a blindfold on. This I accomplished by trying to focus on the few things I could control about getting my father healthier. I did what I could, and left the rest to forces bigger than myself. Even though I didn’t hit a home run on this Olson-esque curveball, at least — by recognizing that it was outside my power to do much else — I didn’t, in a sense, chase a bad pitch.”

Glanville deftly noted that hitting a curve ball requires reaction and adjustment. You can’t keep approaching things the same all of the time and he suggests taking the crazy pitch in stride. This is excellent advice and I must learn to adjust, believe that that things will be fine, and trust that God sees the bigger picture.

Creative Commons Licsense Photo Credit: http://www.flickr.com/photos/24742305@N00/5444096544/in/photolist-9i5qew-8EWHyq-9GYQJR-dcnBPu-bPfjH4-bAkF6G-bPfjN6-edZuvj-edTNwR-edZqrw-edTEuB-edZq9w-edZdkW-edTAXZ-edTB4e-edZoxJ-edTNSH-edZmLQ-edTGZK-edZs7u-edZtiw-edTAJ8-edTABP-edZcBm-edTDE2-edZhSC-edZkA1-bKbbLZ-8tBFn6-8tEGSS-8tEH5Y-8tEGL7-8tEGPs-8tEGY9-bAkFbU-bPfjCH-bAkEX3-bAkLfb-bPfpWD-bPfq1K-bAkLaC-bPftY8-d93Pub-8ZQwbt-fFSUGL-8NbhAQ-8N8cLK-7KUCM6-8imU5w-ds18Ns-8U4bff

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Twelfth_century_headache_-_geograph_org_uk_-_456584Monday afternoon was spent receiving a Remicade infusion. No, it was not regularly scheduled infusion- it was moved up two weeks as my rheumatologist increased the frequency to every 4 weeks and increased the dose from 300mg to 500mg. This is due to the fact that the Remicade/methotrexate combination does not seem to be having the desired impact on RA as evidenced by increased joint pain/swelling, fatigue, and continuously high C-reactive protein tests over the past few months. After trying multiple treatment regimens over the past five years, this result does not surprise me and I knew that the adjustment was coming. Given past experience, I also knew that the chance of getting a “killer” headache after the infusion was high.

My rheumatologist has been working with a neurologist to tackle the headaches. The neurologist mentioned that at the basic level, many headaches are caused by some type of inflammation (see this overview) and he suspects that my body is reacting to the medications in a negative way. There is research to support the idea that inflammatory cytokines including tumor necrosis factor (TNF) may be implicated in causing migraines (see this review of research). Furthermore, it is suggested that anti-TNF medications may be beneficial in treating headaches although no data currently exists to support this notion (for example, see Bo, et al, 2009). But in fact, just the opposite seems to be occurring with some patients taking anti-TNF medications like Humira and Remicade. TNF inhibitor medications used in inflammatory autoimmune diseases are associated with causing headaches. Read any medication guide for these class of biological medications and you’ll see that headaches are one of the most commonly listed side effects (for example, see the FDA guide for Remicade).

My neurologist indicated that two ways to treat headaches include abortive – knock it down after it starts, or preventative-stop it from happening in the first place. I keep a small pill box of sumitriptan (Imitrex) handy at all times in case a bad headache sneaks up on me. I also take a very low dose, 10mg daily, of nortriptyline as a preventative. This old class of tricyclic antidepressant is also noted as helping manage pain and many rheumatologists use it for fibromyalgia and RA. But the “big guns” come out at the time that I receive an infusion. Last month I was given an injection of 150mg of solu-medrol (methylprednisolone) corticosteroid as a powerful anti-inflammatory headache preventative. The nurse slowly injects it into the infusion line and I could feel a tingling move up my arm, my heart rate increase, and a blast of energy come out of nowhere. Just for perspective, the first day on a Medrol dose pack (see my last post) is a total of 24mg of methylprednisolone. 150mg is a high dose of steroids coming all at once! Forget getting any sleep that evening as insomnia is a classic side effect. Last month the solu-medrol injection seemed to help prevent Remicade-induced headaches. But within two hours of receiving the 500mg dose of Remicade on Monday, a massive headache bore down and lasted for the next 24 hours (of course, the lack of sleep probably didn’t help). Two days later it still feels like I received a big butt whipping.

Side effects are one of many reasons that RA patients stop taking medications. Uncontrolled and debilitating headaches certainly are causing me to think carefully about what’s going with my treatment regimen. I can still recall a month or so early last spring when I stopped Actermra infusions and was waiting to start Remicade infusions. It was a wonderful time as my mind was clear and I had no headaches. Yet, the RA was not under control. While taking no treatment for a while helped reduce headaches, the alternative of receiving permanent damage and disability from uncontrolled RA sounds even worse. Of course, my RA is not under control right now anyway!

Creative Commons photo credit: http://www.geograph.org.uk/photo/456584

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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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491px-Muscle_posteriorSeveral recent observations caused me to wonder about the impact of RA on muscles. In the almost five years since being diagnosed with RA, I’ve seen a steady decrease of muscle strength coupled with an increase in periodic pain and aching in muscle tissue. I’ve thought that the aching could be caused by either overuse (comparatively speaking) or by biomechanical processes since the muscles are attached to RA-damaged joints via tendons. I can feel myself getting weaker as time goes on. In fact, muscle strength in RA patients can be reduced by up to 75% of normal (see this study from 1992). During a follow-up visit about one of my ankle surgeries a few years back, the orthopedic surgeon noted in my chart that my calf muscles were getting atrophied. I no longer have the strength to open jars, dig a hole, or even maintain extended use of a muscle on a given task. I began to wonder about the impact of rheumatoid arthritis on muscles.

While muscles haven’t been a primary research target, there have been a few studies about muscles and RA. As far back as 1951, researchers found that inflammation of arteries in muscle tissue was observed in RA patients. In a study of 350 RA patients in Spain, weakness, muscle atrophy, and muscle inflammation were commonly observed in those suffering from RA. A detailed research study by Helliwell and Jackson published in 1994 documented RA’s impact on muscle tissue. They concluded, “Although there is significant muscle wasting in RA, it is likely that reduction in strength is also attributable to joint deformity and pain leading to inhibition of grip directly and, indirectly, by arthrogenous muscle inhibition. Doubts remain about the quality of muscle in RA”. Arthrogenous refers to “starting from a joint”. In 1993, Young produced a model demonstrating the connection between joint damage and muscles.

In addition to biomechanical problems, it is entirely plausible that biochemical processes involved with RA may negatively impact muscle tissue. According to some researchers, RA related cytokines including IL-1 and TNF are involved with breaking down the protein in muscles. According to Rall, et al (1996), “Adults with RA have increased whole-body protein breakdown, which correlates with growth hormone, glucagon, and TNFα production.” They concluded…”And although progressive resistance training led to improved strength and functional status in patients with RA and in controls, we saw no changes in protein metabolism or hormone levels as a result of the training intervention among any of the groups of subjects.” In other words, muscle breakdown continued even in midst of exercise. This mirrors a study by a group from Finland who noted that exercise helped RA patients’ muscle strength but not bone density. In 1974, a group of researchers from Sweden noticed changes in the muscle tissue of RA patients. They stated, “It is emphasized that the type II atrophy must be the result of a more complex mechanism than simple ‘disuse’.”

My suspicions about the biochemical impact and connectedness to RA impacted joints are both confirmed in the research literature. The question then remains as to what may be done to stop or reverse the impact of RA on muscles. Some argue that RA patients should engage in regular exercise in order to maintain muscle tone (see Mayo Clinic, NCHPAD). In a 2003 review of research studies on the impact of exercise on RA patients, it was found that most studies demonstrated that exercise positively impacted muscle strength without negatively impacting pain or daily activities. These results are interesting to me personally because every time I try to engage in exercise or strenuous activity, I feel worse and daily activities are limited (see recent post). Regarding exercise, many experts now recommend, “If you can, you should; if you can’t, you shouldn’t.” (Dr. Borogini Health Central RA website).

The evidence is clear – rheumatoid arthritis does impact muscle tissue. But more research is needed to identify the specific causes and to develop long term solutions. Of course, a bona fide cure for RA would do the trick. Fortunately, there are still researchers seeking answers as attested to by the fact that funding is being provided to study muscles in RA patients (see recent grant award in the UK).

Creative Commons Photo Credit – Public Domain: http://commons.wikimedia.org/wiki/File:Muscle_posterior.png

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