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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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If anything, RA is interesting in that there is never a dull moment as some new adventure waits around every bend. Those adventures may be in the form of a medication that works well, the failure of a medication, new symptoms that appear, etc. Earlier this week I happened to be rubbing my right elbow since it’s been in a lot of pain lately. While rubbing it, I noticed a lump and looked down to see a protuberance that was not there before. I inspected it and compared it to my left elbow determining that it was only presenting on the right side. It was clearly not part of the normal elbow joint. Then it dawned on me, this could be a rheumatoid nodule.

According to the National Rheumatoid Arthritis Society (NRAS) in the UK,

Rheumatoid nodules are firm lumps that appear subcutaneously (ie under the skin) in about 20% of patients with rheumatoid arthritis. These nodules usually occur over exposed joints that are subject to trauma, such as the fingers joints and elbows, though occasionally they can occur elsewhere such as the back of the heel.

In a study of almost 800 RA patients in Spain, the most prevalent extra-articular (outside the joint) presentation was nodules appearing in 24.5% of the sample.

According to a dermatological overview on the topic, the nodules consist of inflammatory tissue called necrobiotic granulomas which contains inflammatory cells such as lymphocytes and other white blood cells. The lumps are usually hard and painless and do not typically require any treatment although they may be removed surgically if needed. Nodules are usually benign but sometimes get infected. Nodules tend to be more common with patients with severe and aggressive RA disease symptoms, who are rheumatoid factor (RF) positive, and who display additional extra-articular symptoms including vasculitis (inflammation of blood vessels) and lung disease. Nodules can even develop in the lungs (see this case study).

The exact source of nodules is unknown but some researchers are beginning to argue that rheumatoid nodules may be related to genetic material which originated from the mother during pregnancy – called microchimerism (see this genetic study). According to Dr. Paget at the Hospital for Special Surgery in New York, patients who use high doses of methotrexate are more prone to develop nodules and the reasons for this are unclear (see also this article on MTX induced nodules). But there has been a decline in the presentation of nodules over the past few years probably attributed to the use of biological treatments. However, one group of researchers exhibited cases where increases of lung nodules were seen in patients using TNF blockers which then decreased after stopping the TNF blocker and switching to Rituxan. Supporting this study, other researchers documented that the use of Rituxan effectively treated subcutaneous nodules.

Rheumatoid nodules are an oft neglected area of research (see this recent review on nodules). In a recently published article in the prestigious international journal Rheumatolgy, Highton, Hessian, and Stamp (2007) pointed out that nodules may serve an important role in understanding RA. They stated,

In conclusion, the rheumatoid nodule is a much-ignored lesion in RA. This is despite the fact that it is a lesion that is destructive of tissue, a key feature shared with the joint lesion. Could this usually peripherally situated lesion be central to understanding which are the core lesions of RA leading to tissue destruction, and which are additional amplification mechanisms? Definition of the seemingly simpler and less diverse inflammatory mechanisms leading to tissue destruction in the rheumatoid nodule might be one way of addressing the increasing complexity of RA pathogenic mechanisms and getting to the centre of the matter.

While rheumatoid nodules tend to get pushed to the back burner, perhaps more research is needed about their pathology, how they develop, and how they are connected to other aspects of RA.

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I’m at a loss about how to describe the various types of pain I’ve experienced with RA. As I prepare this post, all of my PIP finger joints (middle joint) are swollen and tender to the touch. The DIP joint (tip) on my left pinky smarts. The MCP joint (base of finger) on my left middle finger lets me know when I grab the steering wheel. Both wrists hurt when I flex them. My right elbow displays a sharp pain right above the joint. Both knees ache and crunch when moved. My calf muscles feel stretchy and stiff. Both Achilles tendons sting…the right one is bad enough that it was difficult to drive home from work today. The sides of my feet hurt when I press on them. While this day may not typical, one thing is certain…some sort of pain is always present with RA.

Sometimes I find it hard to pinpoint the source or cause of the pain. Yet my analytical mind wants to understand the underlying reasons. Perhaps knowledge can lead to pursuit of the right treatment. But it’s probably more curiosity than anything since my stomach can’t handle oral NSAIDs, I try to avoid taking inflammation-reducing prednisone as much as possible, and I tend to shun narcotic pain relievers for their side effects.

Pain is the body’s way to telling you something is wrong. According to one source,

“[Pain is] an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. While it is unquestionably a sensation in part or parts of the body, it is always unpleasant and, therefore, an emotional experience.”[i]

Pain can be classified as either acute – short term, or chronic – long term.[ii] While some RA induced pain may be acute, it can come and go depending on what joint is being affected, much of it is chronic. Pain sources can be nociceptive – caused from the stimulation of local nerve receptors, or non-nociceptive – caused by problems with the central nervous system.[iii] RA pain is nociceptive since it tends to be localized to various inflamed or damaged tissues. Nociceptive pain can be further divided into somatic – localized to an area resulting from damage to the musculoskeletal system, and visceral – non localized pain.[iv] With somatic pain,

“Patients may describe this as sharp, aching, and/or throbbing pain that is easily localized.” [v]

Pain associated with RA is typically chronic, nociceptive, and somatic. Management for this type of pain is facilitated through the use of analgesics like acetaminophen (Tylenol), non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, or narcotics.[vi]

Another type of pain caused when the nervous system is damaged, called neuropathic pain, may also be associated with RA. [vii] For example, the tingling sensation associated with carpal tunnel syndrome I’ve experienced lately is caused by pressure on, or damage to the median nerve that enters the hand.

With RA, the first and foremost goal is to treat the cause of the pain – inflammation. In this regard, my thought is, “Humira, do your thing so inflammation and pain is reduced.” If not, I’ll be forced to take more drastic actions such as treating the pain symptoms directly. That’s where my treatment options become less available. I guess I’m left with Tylenol, the hottub, topical Voltaren gel (an NSAID), and rest! If that doesn’t work, perhaps I’ll pull out the prednisone tomorrow. I’d prefer to treat the cause directly and not the pain symptoms. In the meantime, I’ll try “taking” some of those peanut M&Ms my daughter brought home for me from back-to-school shopping! 🙂

Photo credit: Creative Commons License http://www.flickr.com/photos/azariusrex/


[i] American Pain Society. Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain. 5th ed. Glenview, IL: American Pain Society; 2003.

[ii] http://www.texmed.org/Template.aspx?id=1462

[iii] http://www.ehow.com/about_5393798_somatic-pain-vs-visceral-pain.html

[iv] http://www.painbalance.org/nociceptive-pain-overview-1956304245

[v] http://endoflife.northwestern.edu/pain_management/part_one.cfm

[vi] http://www.medterms.com/script/main/art.asp?articlekey=10933

[vii] http://www.painbalance.org/neuropathic-pain-overview-2772791

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I can never sit for longer than an hour or so without getting quite stiff. Yesterday, I got up from my chair at church in order to move around a little. As I arose from the chair and put weight on my legs, a sharp pain hit my left knee causing me to almost buckle and fall down. I could barely walk. My right knee has always been the “problem child”…an MRI demonstrated damaged articular cartilage in that joint. But the problems with the left knee were new. On top of this new experience, I noticed an increase in pain and swelling in my fingers, wrists, elbows, and ankles and a decrease in energy. I’ve also experienced tingling in my hands to past few weeks (See earlier post. On a side note, my doctor called me back on Friday evening at 7:00 p.m. – how’s that for service? He didn’t think that the tingling was a side effect of Humira but wanted to see me as soon as possible – I have an appointment tomorrow at noon). I found myself reaching for the prednisone yesterday in an effort to knock down the inflammation and applying Voltaren gel to affected joints. I hadn’t done that in a long time. It became obvious that I’m experiencing a rheumatoid arthritis flare.

The term flare is bantered around routinely. Yet a clear understanding seemed to elude me. Dictionary.com’s medical dictionary gives the following definition for the term flare:

Function: n
1 :  a sudden outburst or worsening of a disease flare s  in rheumatoid arthritis —

Interestingly, this definition is applied to RA. But it doesn’t define what it looks and feels like. I suspect that the vagueness of the term is because of the lack of its use in science and the fact that RA affects people differently. One website describes it as “acute episodes of pain and inflammation.” [i] Scientists routinely use the term “flare” in the research literature but fail to adequately define it. (see this study for example). In one research study, the scientists stated,

“A flare was defined per protocol as an increase of five in active joint count or an increase from zero to three compared with the situation at week 28 (an active joint is swollen or tender on pressure; counting of joint groups in one hand or foot as above)”.[ii]

This definition, while perhaps practical for documenting the efficacy of a particular treatment, doesn’t seem to capture the essence of a flare. In 2009, one group of researchers attempted to develop a standardized definition. Using interviews with 120 rheumatologists and 11 patients, they proposed the following definition:

“(a) flare is any worsening of disease activity that would, if persistent, in most cases lead to initiation or change of therapy; and a flare represents a cluster of symptoms of sufficient duration and intensity to require initiation, change, or increase in therapy.” [iii]

While lacking clarity regarding duration (how long is a flare?), this definition starts to provide meaning with which I can relate. RA patients could fill in the blank on this sentence, “I know I’m having a flare when….”. For me, it’s when I reach for the prednisone and Voltaren gel and feel worn down. That’s a sure sign of a flare. How long will the current flare last? Who knows. But it will pass and I’ll hopefully return to “normal”…as normal as it can be with RA! 🙂


[i] http://www.arthritistoday.org/conditions/rheumatoid-arthritis/self-help-for-ra/arthritis-flare.php

[ii] http://www.cobratherapie.nl/pdf/Boers%20et%20al%20Lancet%201997.pdf

[iii] http://www.jrheum.org/content/36/10/2335.abstract

Photo credit: Creative Commons License http://www.flickr.com/photos/cats_mom/

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Ever since I first experienced it as an 11 year old, snow skiing represents the ultimate in outdoor activities. The exhilaration, freedom, natural beauty, and crisp air of the experience are unparalleled by any other activity. Six months ago it was questionable if I would ever snow ski again. Shifting expectations are part of living with rheumatoid arthritis (see earlier post).

On Friday, ski gear was gathered and loaded. Lunches were packed. All during the drive to the slopes, doubts crept in about whether or not I could even make it down the hill. After two ankle surgeries and now damaged knee cartilage, the ole legs aren’t what they used to be. On top of that, joint pain and damage in the fingers, wrists, and elbows set in over the past year. And exercise? Yea right! But monthly Cimzia injections seem to be helping. Energy levels are near normal and joint pain is much diminished.

We hit the slopes by mid morning starting with a warm up run on a beginner slope. I could do it! After warming up, we actually headed over to the intermediate runs. While the intermediate runs were possible, the torque put on the knees caused some discomfort.  This experience represents a huge victory in the battle against rheumatoid arthritis. And the right knee with the torn cartilage doesn’t feel too bad the day after!

Riding the lift

If the skiing adventure wasn’t enough, I couldn’t help myself from hitting the dance floor at a friend’s wedding tonight. It’s now 10:00 p.m. on Saturday evening and it’s clear that bedtime is near after two full days. Who knows if skiing or dancing will be possible again, but a satisfaction not felt in months – a victory savored – will help put the mind at ease as the body lays down for much needed rest.

Postscript on 12-14-09. There was a price paid for all this fun. I had no physical energy and was very stiff Sunday and went to bed by 8:00 p.m. But it was well worth it!

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I want to blog about arthritis for three reasons. 1. Its therapeutic to write about what’s going on with me. 2. To communicate with my friends and family. 3. Bring awareness to autoimmune arthritis.

First Signs

In May 2004, I started having severe eye pain, redness, and blurred vision. I ended up at an ophthalmologist and within 1 minute he pronounced that both eyes had acute anterior iritis – an inflammation of the iris. After performing some tests and prescribing continuous doses of prednisone steroid, he asked me if I ever had joint problems. I thought that this was odd coming from a physician dedicated to treating eye problems. He stated that iritis is a common symptom in autoimmune disorders. He said that there are blood tests but since I had no other symptoms, I could just wait and see what happens. I quickly forgot all about it.

Next Signs

In the fall of 2006, I began to have problems with my Achilles tendons. They were swollen, inflamed, and very painful to the touch. The left tendon was worse than the right. It affected my ability to exercise. After visiting an orthopedic surgeon who specializes in ankles, he suspected that there was tendonitis and/or tearing in the tendon. Upon examination, he stated that the problem was likely congenital because I have long leg bones causing the tendon to stretch. An MRI of the tendon revealed tears in the tendon. Surgery on the left tendon was performed in January 2007. He repaired the torn section and also performed a lengthening of the tendon in order to reduce the tension. I mentioned that the right tendon was also hurting and the doctor indicated that we should just keep an eye on it while the other one healed from the surgery. I was hiking by the summer of 2007 and snow skiing that next winter. However, by that time, my right tendon was bothering me enough so I headed back to the orthopedic surgeon. A MRI revealed tearing and the same surgery was performed on the right leg in April 2008. I recovered and was back to snow skiing by December 2008. Never the less, my legs never felt the same way before the surgery.

Putting it all Together

In January of 2009, I began to experience pain in the middle joints of my fingers on both hands. This was accompanied by morning stiffness and a lot of fatigue. I also had chronic hives, usually in the evenings, on my arms and legs. I visited my regular doctor and told him of my symptoms. After describing my history with the eye problems and Achilles tendon tearing, he began to suspect that I had an autoimmune disease – like rheumatoid arthritis (RA). One clue is that symptoms presented symmetrically on both sides of the body…iritis in both eyes, Achilles tendon problems on both sides, etc. He mentioned that fatigue is also a common symptom. He referred me to a rheumatologist – a specialist in arthritis and associated diseases.

After completing a long medical history survey, multiple office visits, numerous blood tests, and hand x-rays, the rheumatologist said that I have some sort of autoimmune arthritis. My blood tests were negative for rheumatoid arthritis factor (about 20-30% of people are negative but have the symptoms). But the bottom line is that this is a clinical diagnosis based on symptoms. There is no single blood test. He initially called it seronegative arthritis or spondylarthropathy. Some call it seronegative rheumatoid arthritis. Sometimes, blood tests convert to positive over time. Doesn’t matter to me – I knew I felt bad.

Autoimmune means that your body’s own immune system is attacking itself. There is no known reason why this happens. Similar autoimmune diseases include ankylosing spondylitis, psoriasis, Crohns disease, and lupus. Autoimmune arthritis differs from the more common osteoarthritis in that its cause is immunological, not trauma induced. Most people will have some osteoarthritis by the time they are in their 60s. Autoimmune arthritis affects millions of Americans and can start anywhere from the 20s-50s.

Since x-rays of my fingers revealed the start of bone erosion, the doctor started me on a medicine called sulfasalazine which was supposed to reduce inflammation. I had a terrible allergic reaction so that got halted and I was put on methotrexate. This is an immunosuppressant drug that is supposed to slow the progression of joint damage. After three weeks on that drug, my body clearly told me it didn’t like it…constant nausea, headache, feeing like a truck ran over me, etc. So, off to the doctor I went again. By this time, joint pain had extended to the base of my fingers, both wrists, both elbows, and my knees. My ankles were always hurting since before the surgeries. At times, I could not lift heavy objects and even climbing the stairs was laborious. My joints popped and cracked when moved. I was stiff most of the day and the fatigue was worsening. The fatigue is the hardest part for people to understand. I describe it like having the flu. I was prescribed prednisone steroids to check the inflammation. This is fine for a short period of time but not long term.

The doctor finally put me on a “biological” drug called Enbrel. It’s a protein designed to attach itself to inflammation-causing chemicals released by white blood cells in the joints. It must be self-injected once a week – it doesn’t hurt too much. The drug is made via a recombinant DNA process where an engineered human gene designed to produce the protein is grown and harvested. The retail cost is $1,800 a month! Thank God for insurance coverage and a $25 co-pay!

At this point, I slowed down on work, church, and other activities in an effort to rest and give some time for the Enbrel to work. After about 2 weeks, today is the first day that I didn’t wake up too terribly stiff and I actually had energy the entire day – didn’t even take a nap! I’m hoping this is a sign that Enbrel is starting to work – it usually starts working in a couple of weeks with full impact over a few months. But time will tell. Enbrel and related drugs suppress the immune system so I have to stay vigilant for infections. There is no cure for arthritis. But people successfully receiving treatment go on to live normal lives. My goal is to snow ski again next winter!

Some of the hardest parts of dealing with this are the drawn out processes of diagnosing, figuring out treatments, and explaining to people what’s going on. And you never know what’s around the corner. Flares can come and go. But through all of it, I’ve come to rely on God, family and friends. I have hope for the future. I have hope that medical treatments will work. I have hope that God will heal me. There is no big celebrity carrying the flag for arthritis. There is no special ribbon to be worn (maybe a DNA-shaped helix ribbon would work!). But I hope everyone reading this will be more aware of the issues. Ask questions. And above all, pray for me.

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