Posted in Uncategorized, tagged Autoimmune disease, biologicals, DMARD, infection, infusion, NSAID, RA, rheumatoid arthritis, rheumatologist, Rituxan, Xeljanz on September 27, 2015|
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It appears that my 2.5 year journey with Rituxan is coming to an end. A scheduled infusion was cancelled at the last minute by my rheumatologist due to side effects from the last infusion and lack of efficacy. For anyone who knows my journey with RA, it’s no secret that I’ve been through a gamut of treatment options. The list of previous treatments reads like a who’s who of pharmaceuticals for autoimmune diseases. I’ve tried the following in chronological order:
- sulphasalazine (oral)
- methotrexate (oral)
- Enbrel (self-injection)
- Meloxicam (oral)
- Salsalate (oral)
- Cimzia (self-injection)
- Humira (self-injection)
- Orencia (infusion)
- Imuran (oral)
- Leflunomide (oral)
- Actemra (infusion)
- methotrexate (self-injection)
- Remicade (infusion)
- CellCept (oral)
- Rituxan (infusion)
That’s two NSAIDs, five DMARDs, and seven biologics. The reasons for stopping these treatments varied from experiencing side effects to lack of efficacy. Side effects included serious infections, low lymphocyte counts and infusion reaction – persistent migraine, nausea, flu-like aches and pains. I’m very hesitant to switch treatments as the options are getting rather slim. I’ve probably resisted dropping Rituxan longer than I should’ve for this reason.
The latest treatment being recommended by my rheumatologist is the newer drug Xeljanz which is called an “oral biologic”. My rheumatologist and I talked about this drug several years ago when it was first approved in the United States. But she wanted to wait until there was more information and experiences. It was not approved by a European drug agency for safety and efficacy reasons. Xeljanz works by inhibiting a molecule called kinase. Kinases are molecules linked to a cellular pathway, called the Jak-STAT pathway, that produce inflammation-causing cytokine proteins. In RA, it’s these cytokines that ultimately cause the tissue destroying symptoms. Potential side effects are pretty typical of immune suppressing medicines, such as increased risk of infections, but also include perforations in the stomach and intestines. I’m waiting for insurance approval and shipment from a speciality pharmacy. In the meantime, I’ll sign up for the co-pay assistance plan from Pfizer.
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Posted in Uncategorized, tagged bacteria, blood test, c diff, corticosteroid, EMG, infection, meningitis, mri, muscle atrophy, rheumatologist, Rituxan, Rituximab, specialist, steroid injection, surgeon on July 12, 2015|
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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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Posted in Uncategorized, tagged Arava, autoimmune, Autoimmune disease, Azathioprine, biologic, biologicals, cervical surgery, DMARD, elbow, fatigue, gastointestinal, headache, infusion, joint pain, joint swelling, migraine, neck surgery, rheumatologist, Rituxan, Rituximab, stiffness, treatment on December 20, 2014|
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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.  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. 
A new treatment experiment begins. Hopefully it will bring some much needed relief.
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Posted in Uncategorized, tagged ankles, Arthrogram, bone erosion, diagnosis, hip, hip labrum, inflammation, injection, joint, mri, rheumatoid arthritis, rheumatologist, steroid injection, stiffness, swelling, trochanteric bursitis on August 26, 2014|
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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. 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.
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. 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.
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Posted in Uncategorized, tagged ACR, American College of Rheumatology, DAS28, diagnosis, HAQ, RA, research, rheumatoid arthritis, rheumatologist, treatment on June 11, 2014|
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A recent article in the online publication for doctors called Rheumatology Network calls into question the commonly used outcome measures used in RA. The article, titled RA Outcome Measures Made Simple (or Not?), makes the argument that simpler measures of RA activity are needed.
Over the years, numerous measurement tools have been developed to help doctors determine extent of disease activity. These measures include the HAQ, DAS 28, CDAI, ACR 20, and RAPID 3 among others. These survey-type tools usually focus on joint activity, swelling, pain levels, disability. Some, like the DAS 28 (28 refers to 28 joints – the number of RA affected joints), include blood tests in the assessment. An online DAS 28 tool is available for doctors and patients. If you are a RA patient, your rheumatologist may have used one or more of these tools for diagnosis and to monitor treatment effectiveness. These tools are also used for drug development and testing.
Over the years, these measurement tools have been the target of much research in terms of validation and correlation with the disease (e.g. Radner, et al, 2014). Because they have been shown to provide a modicum of usefulness, they remain in vogue by the rheumatology community. However, in spite of their usefulness and relationship with RA disease components, the ability of these surveys to accurately and completely paint a picture of the disease remains in question. A recent study by Cheung et al (2013) demonstrated that doctors and patients sometimes agree, and sometimes disagree on some of these measures. Sometimes doctors and patients completely disagree (see Castrejón, et al, 2014). In a research paper that I helped present at the American College of Rheumatology conference last year, it was found that the commonly used HAQ tool did not always adequately capture disease impact and activity in patients.
When it comes to subjective measures like impacted joints and bodily function, it’s oftentimes difficult to develop tools that measure variables with 100% accuracy. One would like to think that measurements of biological chemicals involved in disease processes would be more accurate, But that is not always the case and they are also difficult to develop with 100% accuracy (see this article). The bottom line is that researchers need to continue to work on developing useful and accurate measures for RA disease activity. Only then can diagnosis and treatment options be maximized.
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Over my life I’ve had to make several trips to the emergency room. Most of these were from acute situations, occurred during childhood, and involved accidents from wild, boyhood behaviors. One time I was jumping a ramp on my bike and my jaw landed on the sidewalk resulting in six stitches and a permanent scar. But yesterday I found myself at the ER for a chronic situation that got out of hand.
I’ve lived with neck pain over the past couple of years and my rheumatologist had an x-ray done in 2012. Nothing significant was seen. Pain continued to gain in intensity and it began to radiate down my neck into the shoulders. I assumed that it was muscle tension and sometimes took muscle relaxants at night. About a month ago I began to notice tingling in my left fingers. I was getting physical therapy for my right elbow and the therapist said that it was likely caused by inflammation in my elbow and wrist (cubital and carpal tunnel syndrome – common in RA). The pain continued to grow in intensity and the past week it got to the point where it felt like holding up the 12 pound bowling ball which is my head was just not possible. On Thursday I left work at 3:00 in the afternoon with such intense pain that I could barely drive. I made it to my home city and actually pulled into the hospital parking lot wondering if I should walk into the emergency room. I called my rheumatologist’s office and told them what was happening. They made an appointment for the next morning and said that I should go to the ER if I felt it was needed. I eventually drove home and tried to nurse my neck. Even after taking muscle relaxants, sleeping was not possible and I woke up at 3 in the morning. I barely made it to the appointment with my rheumatologist in the morning. After a few moments talking and examining me, she looked directly me in the eye and said that I needed to go to the ER because it was clear that I needed immediate pain management and a diagnosis of what was going on. She offered to call an ambulance but I told her I would drive myself – call me crazy or stubborn.
I got to the ER and walked in. They immediately took me to an exam room and began to get vitals and ask me what was going on. The doctor prescribed major pain meds via IV and they had to double to dose after the first one didn’t help much. He ruled out infection and accident and suspected neck problems from rheumatoid arthritis. He ordered an MRI on my neck. The intense pain made it tough to lie still in the MRI machine. The MRI revealed spondylosis (degenerative arthritis), two herniated discs pushing into the spinal cord, and bone spurs pushing into radiating nerves (see MRI picture). The cause of the pain and tingling was finally revealed. The ER doctor actually called my rheumatologist and had a conversation with her about the situation. He sent me home with pain meds and steroids. I have an appointment Monday morning with a spinal surgeon to determine next steps.
Most people think of RA only impacting small joints like the fingers. In fact, the ER doctor mentioned that when first talking to me but I told him that most of my large joints including ankles, knees, hips, elbows, and shoulders show RA induced damage. Now it appears my neck has also been impacted. According to a 2006 article in the journal Rheumatology, “The polyarthropathy of rheumatoid arthritis affects the joints of the spine, and particularly the upper cervical spine.” The lesson from this situation is don’t ignore neck pain if you have RA!
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