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Posts Tagged ‘stiffness’

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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I’m still in the midst of recovering from cervical fusion surgery on May 15 and am currently completing physical therapy. The process seems to be going well, pain and numbness is almost completely gone, and I’m slowly regaining muscle strength. After dealing with it for over 8 months, the neck and associated parts finally feels much better. But RA is never silent and has a way of rearing its ugly head just when you think things are calm. Sure, there is always the ongoing “background noise” of RA – fatigue, joint and muscle pain, finger swelling and pain, joint locking, and the persistent ankle pain after having three surgeries. But now the left hip is begging – no screaming – for attention.

Hip problems became apparent almost two years ago when I began getting steroid injections for trochanteric bursitis from my rheumatologist. Bursae are sac-like structures that are found in some joints and aid in providing friction reduction.[1] I had a bursa removed as part of an ankle surgery. The trochanteric bursa is on the outside of the hip and is commonly involved in RA.[2]

While my neck was healing, the left hip progressively grew worse. Sitting for any length of time was impossible, getting in and out of a chair and car was difficult, sleeping on the left side was not feasible, and the left side was favored while walking. At a recent rheumatology appointment, a fourth cortisone steroid injection was given into the trochanteric bursa. But the injection brought no relief. My rheumatologist referred me to an orthopedic specialist.

The orthopedic surgeon examined x-rays and noted that the space in the ball and socket joint, while somewhat reduced, looked fine. There was no bone erosion perceived. We spent some time discussing my earlier problems with the trochanteric bursa, the multiple steroid injections, and my current symptoms of groin and buttock pain. He then laid me down on my back and began to examine my hip movement through a series of tests. I couldn’t lift my leg off the table and extreme pain was felt when he manipulated it in various ways. After the physical exam his entire line of inquiry changed from the more external trochanteric bursa to focusing on tissues around the joint itself. He immediately began to suspect a labral tear. The labrum is cartilage that surrounds the hip joint.[3] But a physical exam and x-ray cannot directly pinpoint what’s really going on so an MRI is needed. A traditional MRI can’t always detect soft tissue in the complex hip joint so an arthrogram is added. Before the MRI, a radiologist injects a combination of fluid, steroid, and a contrast into the hip joint under the guidance of an x-ray. After the injection, you go directly to the MRI machine. The steroid can also provide a therapeutic purpose in reducing inflammation and pain. I am scheduled for an MR arthrogram tomorrow and hopefully it will help solve the mystery.

In addition to the more traditional bone erosion, I have a history of developing soft tissue damage to the musculoskeletal system from RA. This episode with the hip seems to be following that story.

[1] http://orthoinfo.aaos.org/topic.cfm?topic=a00409

[2] https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Tendinitis_and_Bursitis/

[3] http://www.hss.edu/condition-list_labral-tears-hip.asp#.U_zH9WRDvA4

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It’s been three weeks since I had an anterior cervical discectomy and fusion (ACDF) surgery on vertebrae C5-C7. I outlined the procedure in an earlier post. Immediately upon coming out of surgery I could feel a positive difference in arm and shoulder pain – the site of most of the symptoms from herniated discs and bone spurs which pressed on my spinal cord and nerve roots which extend into the shoulders and arms. There have been times since surgery when I’ve experienced some finger tingling, arm pain, and shoulder spasms but that is to be expected as the surgery site recovers and the overall trend has been positive.

During ACDF surgery the neck vertebrae are expanded back to their normal distance apart after the herniated disc collapses. The disc replacement, in my case a plastic cage seeded with my own bone tissue, returns the space back to normal. I could tell things were stretched out as the muscles in my neck were tight and painful immediately following surgery. This subsided after a week or so and I can feel that these muscles are loosened up. Maybe I grew taller in the process!

neck scarIt looks like I got into a knife fight and lost (see picture) – but you should see the other guy (well, he got paid a lot of money). It’s pretty amazing that they can perform such a dramatic surgery through so small an incision. The surgeons rely on microscopes for parts of the procedure. There were no external stitches or staples in an effort to minimize the scar. It is in a rather conspicuous place. But like with similar incisions from other surgeries, I suspect that the scar will diminish over time.

Physical activities remain restricted. You are instructed not to lift anything over 5-10 pounds. This is the hardest restriction to follow as I find myself wanting to engage in regular activities around the house. I have to constantly catch myself and ask for help. Walking is highly recommended from the beginning and I’ve been doing about 1 mile each day. Since no longer taking narcotic pain meds, and getting some movement back in the neck, I did drive a short distance to the grocery store this week. Long drives are probably out for some time until more muscle strength is regained.

Rheumatoid arthritis symptoms flared after the surgery with increased joint pain and stiffness. Fatigue also increased but that could be from the recovery process. Flaring is to be expected given the stress put on my body from the anesthesia and surgery. Taking NSAIDs or steroids to help is not possible as they negatively impact the bone fusion process.

A follow-up appointment with the surgeon is in three weeks at which time they will take an x-ray to make sure the hardware remains in place and to check on the status of the bone fusion. It will be interesting to see the titanium hardware! The vertebrae can take 3-12 months to fully fuse.

At this early point, I am glad that I had the surgery. But time will tell if symptoms will continue to improve.

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In the five some years since being diagnosed with RA, I’ve tried a boatload of treatment options including various NSAIDS (chewed up my stomach), multiple DMARDs (one caused an allergic reaction and am currently injecting methotrexate), and I’m currently on my 7th biological medication – Rituxan infusions.

My rheumatologist always says that the treatment goal is that I hardly pay attention to my joints throughout the day. This sounds like everyday language for the ultimate target for RA treatment which is called clinical remission. This is defined as one or less than on tender joint, one or less than one swollen joint, low inflammation blood tests, and a strong patient self-assessment. Over the five years of treatment, I’ve never gotten anywhere close to these goals. But over the past couple of weeks it’s become clear that Rituxan is working like no other treatment combination has! Pain, swelling, and tenderness are hardly noticeable. My hip doesn’t hurt when sleeping or walking. My knee can pull me up steps. I can get out of bed relatively quickly without much stiffness. My right ankle that’s had 2 surgeries lets me know it’s there but it doesn’t scream at me all day along. The bottom line is that RA is starting to take a back seat in daily life…just like my rheumatologist hoped for! This is the first time in five year to have this experience and for this I am very grateful. It was a long time coming and many starts and stops and trying dozens of drug combinations. Of course, I’ll temper the joy just a little and take each pain free day at a time as you never know what lurks around the bend.

It took a while for me to figure out what was going on with Rituxan. These complex biological processes take time – in fact it’s been 4 months since my first infusion and I was already giving up hope for Rituxan to work. But I was also quite distracted over the past month fighting a battle with chronic and almost daily migraines. We’re not sure what’s causing them although my neurologist believes that genetics, a fight with an autoimmune disease, and the medications used to treat RA may all be contributing. So while RA is finally getting under control after 5 years, we’re busy trying to find the best treatment for the migraines. In addition to the emergency triptans (like Imitrex) to take when a migraine comes on, I’ve been on three different long term preventative medications, and have been into the infusion clinic two times for a cocktail of meds in an effort to break a long migraine cycle – the latest was a 4 day killer over the weekend. I have an MRI/MRA  (image of brain and blood vessels) scheduled next week to rule out any functional issues and we’re seeking insurance approval for botox injections which my doctor said works very well for his patients.

Two steps forward for RA treatment success after five long years and dozens of drugs! For this I will truly thank God as I was getting close to giving up hope as the options were getting few and far between. One step back with the nasty migraines. Such seems to be the life of a patient with a chronic disease. But just like what happened with RA, I believe that the migraines will eventually get under control. Two steps forward and one step back still equals forward progress.

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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.

moa-illustration

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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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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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