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A visit to my rheumatologist on Friday turned from a routine 15 minute visit into a 45 minute triage session. At the end, the rheumy mentioned that sometimes things can seem to swirl out of control and it certainly feels that way right now.

We discussed neck/shoulder/arm pain and muscle atrophy which increased over the past few months. My neurologist ran a large battery of tests including MRIs of the chest and brain, nerve conduction and EMG tests, and numerous blood tests. The only issue found of note was muscle dysfunction on the EMG. A myelogram/CT scan two month ago showed some nerve compression in the neck but the surgeon said it did not warrant intervention. My rheumy argued that a second opinion was now in order and said that they would contact two neurosurgeons for ideas about what to do.

I received a steroid injection into my right shoulder. Both shoulders have been crunchy and painful for over two years but have kicked up a notch lately to the point of being quite distracting during both the day and night. My rheumy is requesting that a radiologist reread a recent MRI of my chest to examine potential joint damage to shoulder joints. The MRI was originally ordered to look for potential inflammation in the brachial plexus nerves but caught images of each shoulder joint.

Blood tests were ordered and included routine complete blood count (CBC), metabolic panel, and inflammation measures. But immunoglobulin (Ig) tests were also ordered for the first time. Immunoglobulins are immune antibodies which may be indicative of fighting infections. These were seen by the rheumy as important given my long term battle with meningitis and now C diff bacteria. I just finished a second antibiotic for C diff, a particularly problematic gut bacteria that causes severe diarrhea and toxin-induced ulcers in the colon. I started on the antibiotic vancomycin for 14 days but it did not control the infection as another positive C diff test came back. My infectious disease doctor said that the bacteria was not likely antibiotic resistant but that my compromised immune system from RA and Rituxan was making it difficult for me to fight the infection. I was scheduled to receive the next Rituxan infusion in a couple of weeks but my rheumy suggested putting it off until the infection gets under control. The infectious disease doc put me on a new antibiotic called Dificid or fidaxomicin. It was recently approved for treating C diff infections. It cost $1,400 for 20 pills! I just finished that 10 day course but the symptoms persist. My rheumy asked me to contact the infectious disease doctor Monday and I also started the process of setting up an appointment to see my gastroenterologist who will want to do a colonoscopy to check on the physical status of the colon. In the meantime, the rheumy set me up with an immunologist to check my immune system particularly IgG antibodies which is involved in fighting infections. The rheumy told me that IgG infusions may be a possibility to help boost the immune system and help me fight the C diff infection.

All told including office visits, ER visits and hospitalization, the following specialists will have been seen over the past two months: emergency room, internist/hospitalist, radiologist, neurosurgeon, neurologist, immunologist, infectious disease, rheumatologist, and gastroenterologist. Trying to keep up with all of these issues and specialists is almost a full time job. I appreciate that my rheumatologist serves as the central care giver who really knows all of my conditions and treatments. Hopefully some relief will be forthcoming soon.

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As documented in an earlier post, a recent battle with bacterial meningitis was likely caused by a myelogram/CT scan ordered to check out potential joint damage in the neck and back. After 10 days on an IV antibiotic, the infectious disease doctor said that the antibiotic could be stopped and he pulled the PICC line – a welcome word indeed! While the original CT scan showed some narrowing of the opening in the vertebrae for the nerve roots, it failed to completely explain the ongoing pain, numbness, tingling, burning sensations, and muscle weakness. Within six months of neck surgery I regained strength and related symptoms were much reduced. But now exercise and physical activity have been difficult if not impossible. My wife grabbed my biceps one day and even mentioned that I need to lift weights! Oh the nerve. 🙂

After these CT scan results, my neurologist conducted electromyography (EMG) and nerve conduction tests to try to get a better picture of what is happening. These “fun” tests are really not all that uncomfortable. The nerve conduction study involves hooking electrodes onto the fingers and then touching another electrode at various places sending an electrical shock to test the nerves. During the EMG, a small needle is placed in a muscle, the doctor asks you to contract the muscle, and then a measurement is taken on an oscilloscope. You can also hear the measurement amplified on a speaker as a series of crackling sounds. As the neurologist conducted the test starting with the forearm then up the arm, shoulders, and finally the neck, the sounds changed and became less regular. At this point the doctor mentioned that the muscles were damaged and not functioning properly. He called for an MRI on my neck and chest area which will be done this week. He believes that the symptoms are either related to a physical issue in the neck joints that were not seen on the CT scan or due to inflammation of nerves from my rheumatoid arthritis.

The neurologist listed six diagnoses on my chart including cervical degenerative joint disease, pain of upper extremity, disturbance of skin sensation, muscle pain, myalgia and myositis, and muscular weakness. This was the most number of diagnoses listed for any ordered test I’ve experienced! Myalgia and myositis were new terms to me. Myalgia simply means muscle pain. Myositis refers to inflammation of muscle tissue and can be caused by injury, infection, or autoimmune disease. I hope the MRI can shed light on what exactly is happening so treatments can be initiated.

The past few weeks, months for that matter, have been a roller coaster of medical symptoms, treatments, and tests…one right after another. One thing about RA is that there’s never a dull moment and you never know what lies ahead. I just hope that I don’t have to stay as a “100-pound weakling”!

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six month cervicalToday was a six-month follow-up on anterior cervical discectomy and fusion surgery where two herniated discs were removed, vertebrae C5-C7 were fused, and bone spurs removed. Before seeing the surgeon, a CT scan was conducted. The scan showed significant bone growth between the vertebrae (circled in the image). The screws are visible in the scan. The surgeon was very pleased at the amount of bone growth, decreasing muscle pain, increasing muscle strength, and decreasing numbness and tingling in my fingers. Nerve regeneration may take 1-2 years and hopefully things will continue to get better over time. If Payton Manning can lead the Denver Broncos to the Super Bowl after a similar surgery for one disc, then there’s hope for me!

Vertebrae C1-C2 were also checked on the CT scan since rheumatoid arthritis commonly impacts those joints that are near the skull. On a MRI radiology report last spring, it was noted that there was mild degeneration in that region. The surgeon showed those joints on the CT scan and indicated that there was some inflammation and bone-spurring present but it didn’t appear to be problematic at this time. I was told to pay attention to any deep pain in that region.

This was a very good report to receive. In hindsight, getting this surgery was a good decision giving the deteriorating situation at the time.

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My right elbow has been giving me troubles for over a year now and my rheumatologist referred me to an orthopedic surgeon who specializes in hands and elbows. An MRI revealed a 50% tear in a tendon. Other parts of the elbow exhibit pain. In fact, the left elbow also displays the same symptoms but to a lesser extent probably due to the fact that I am right handed. The orthopedic doctor knows about my struggles with RA and my history with soft tissue damage. In fact, he works in the same clinic with the surgeon who conducted three surgeries on my ankles.

A bevy of conservative treatments were prescribed starting with rest and immobilization with splints designed to prevent movement of the tendon. After that failed to help, a cortisone injection was done. The doctor also used the needle to aggravate the tissue in the joint in order to stimulate a healing process by increasing blood flow to the region. Needless to say, excruciating pain was experienced for the next 24 hours but after that, the steroid provided some relief…for about 1 month after which time the pain returned. Occupational therapy was then prescribed. Occupational therapists (OT) tend to focus on the arm from the elbow down to the hand and they engage in treatments similar to physical therapists. Treatments included heat and transcutaneous electrical nerve stimulation (TENS), gentle stretching exercises, and continued use of immobilization with splints. The goal was to move into more rigorous strength building exercises. But this goal was never met as the pain only became worse. After several months of OT, the therapist made the decision that things were getting worse and indicated that I need to return to the surgeon to determine next steps. At about this time, severe neck problems were popping up and the orthopedic surgeon and I both agreed that priority needed to be given to the neck. The past six months were devoted to recovering from neck surgery.

The elbow continued to cause problems and it came to the point where use was difficult and pain was constant so I returned to the orthopedic surgeon. He said that surgery to repair the torn tendon and its attachment point to the bone would be the next option. But before doing that, he wanted to try one more, last ditch strategy – a platelet-rich plasma injection or PRP. He admitted that the research was sketchy and that it was not an FDA or insurance approved treatment. I would be required to pay for it out of pocket and the cost will be about $300. His argument is that in spite of the lack of experimental research on its effectiveness, there is clinic evidence, it is relatively inexpensive, and it is not as invasive as surgery. He did give me a choice between PRP and surgery but his comments were, “If it were me, I would do this first before having surgery.”

In PRP, a patient’s blood is drawn, platelets are separated from other blood components, and the concentrated solution is injected into a joint that has tissue damage in an effort to jump-start a healing process.[1] The theory is that growth factors contained in the platelets are able to help damaged tissue heal. It has been applied to tendon areas like the Achilles and elbow where there is a lack of blood low and healing is difficult. This approach is quite popular with professional athletes but clinical trails show mixed results (Harmon & Rao, 2013).[2]

In medical practice, there is a range of possible qualities of treatments. Balshem et al (2010) categorizes the ranges from very low quality to high quality evidence.[3] The approval of drugs would rate as high quality evidence. At the lowest end of the evidence quality continuum would be treatments that have little or conflicting evidence. Platelet-rich plasma would rank at the lowest end. This is why the FDA and insurance companies won’t approve it. There is even less research about PRP and rheumatoid arthritis. A search of research studies specific to RA revealed one study conducted on pigs[4] and another conducted in 1989 on knees of RA patients.[5] Never provided sufficient evidence documenting the effectiveness of PRP for rheumatoid arthritis.

Given the lack of evidence, I remain quite skeptical about PRP but am willing to give it a shot (pun intended) in order to avoid surgery.

[1] http://orthoinfo.aaos.org/topic.cfm?topic=A00648

[2] http://www.ncbi.nlm.nih.gov/pubmed/24319241

[3] http://www.jclinepi.com/article/S0895-4356(10)00332-X/abstract

[4] http://onlinelibrary.wiley.com/doi/10.1002/art.30547/full

[5] http://link.springer.com/article/10.1007/BF00270285#page-1

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The American College of Rheumatology (ACR) diagnostic criteria incorporate four main areas – joint involvement, RA related blood tests, general inflammation blood tests, and duration of symptoms.1According the ACR,

Joint involvement refers to any swollen or tender joint on examination, which may be confirmed by imaging evidence of synovitis.”2

Physical examination is the starting point for identifying joint involvement. But confirmation by actually looking inside the joint with imaging techniques remains a critical part of confirmation.The synovium is a sac-like lining around certain joints. It provides nutrients and lubrication for joint soft tissues. During the disease processes involved with RA, the synovium swells and thickens, becoming permeated with inflammatory cells and chemicals. Ultimately, cartilage and bone tissue erodes leading to the classic joint damage associated with RA.3 The synovial fluid can be taken from a joint and analyzed for chemicals and cells associated with RA.4 This can be done via needle biopsy or surgery. During an ankle surgery I had several years ago, the orthopedic surgeon sent a sample of tissue to a laboratory for analysis – the results came back positive for RA related synovitis. Medical imaging procedures can be used in as a noninvasive technique for examining a joint.

Read the rest of the article at http://rheumatoidarthritis.net/living/medical-imaging-diagnosing-ra/

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Corticosteroids or glucocorticoids are powerful anti-inflammatory drugs commonly used to treat a variety of medical conditions. They are not to be confused with anabolic steroids that are notoriously abused by athletes.1 Anabolic steroids are associated with muscle mass gain and corticosteroids are connected with metabolism and immunity.

Most every RA patient has probably taken oral steroids in the form of pills or a dose pack that tapers down the dose over a period of time. Oral steroids are effective at providing quick reduction of RAsymptoms although long-term use is generally discouraged and even short-term use is being questioned.2 When taking an oral steroid, the drug goes throughout the entire body systemically. But there are other forms of steroids that are directly injected into a specific area of the body in an effort to treat RA related symptoms. Since being diagnosed with RA, I’ve had one steroid injection into my right knee, four into my left hip, one into my neck, and one into my right elbow.

Read the rest of the post at http://rheumatoidarthritis.net/living/steroid-injections-treating-ra-symptoms/

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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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