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 Autoimmune disease, emergency room, hospital, immunocompromised, infection, infusion, PICC line, RA, treatment on May 27, 2015|
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After the latest ordeal of the past week, the weekend was pretty low key although I was still fighting bad headaches, dizziness, and general malaise. On Monday afternoon, a nurse from the hospital’s emergency department called to say that after four days, the spinal fluid culture came back positive for a bacteria called Streptococcus viridans. They wanted me to come back to the ER immediately. Upon arrival, an IV dose of the antibiotic Ceftriaxone was given along with 1000ml of saline. The doctor came in and said that they were admitting me to the hospital for meningitis which is a general term for an infection of the cerebral spinal fluid and tissues around the brain and spinal cord. This can be a very serious disease and this was the reason for admission. An infectious disease doctor came by to discuss my case. He indicated that this strep bacteria is commonly found on the skin, mouth, and nose and is rarely found in meningitis. He suspected that the original lumbar puncture of the myelogram from the previous week introduced the bacteria into the spinal fluid. While the number of bacteria found in the culture was low, the fact that I’m immunocompromised from taking Rituxan for RA caused the doctors to take an aggressive approach. The infectious disease doctor prescribed a course of IV treatment with the antibiotic Ceftriaxone. This began while in the hospital and requires two doses every 12 hours for 10 days. Fortunately, the IV infusion only takes 10-15 minutes. It was decided that I could be discharged after one sleepless night in the hospital (hospitals are not places to get a good night’s rest). But I would need to continue the IV antibiotics for the next nine days. Instead of returning to the infusion center twice a day, a peripherally inserted central catheter or PICC line was put in (see picture). This was a rather intense installation process as the catheter is put into a larger vein in your arm and the tube goes all the way to an area close to the heart. It involved a specialist nurse using ultrasound guidance and a sterile field in order to get the tube in the right place. The PICC line allows the patient to self-administer the medicine at home. A local speciality infusion pharmacy handled the prescription and a nurse came to my house with the medicine and supplies and spent over an hour teaching me how to safely administer the antibiotic. After self-injecting RA meds over the years, this process is fairly easy.
So an entire week of my life was devoted to a variety of medical processes and procedures. It all began with an attempt to image potential joint damage in my neck and lower spine and ended up with a serious infection. And it’s not quite over as I have an electromyography(EMG)/nerve conduction test with my neurologist tomorrow afternoon to check on the potential source of my muscle and nerve pain – the original reason for the myelogram. And then an appointment with the infectious disease doctor on June 4th to check progress and hopefully remove the PICC line. Such is life in the RA fast lane!
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Rheumatoid arthritis is an autoimmune disease meaning that the immune system attacks itself. According to the American Autoimmune Related Diseases Association (AARDA), upwards of 50 million Americans suffer from over 80 identified autoimmune diseases. Some of the most common autoimmune diseases include rheumatoid arthritis, Crohn’s Disease, lupus, multiple sclerosis, psoriasis, and type 1 diabetes. Autoimmune diseases tend to run in families. Immunosuppresant drugs are the current treatments of choice for these diseases and they come with some serious potential side effects. Much more research is needed in order to fully understand these devastating diseases and to develop better treatments and cures. Unfortunately, autoimmune diseases get a smaller proportion of research dollars compared to cancer and heart disease.
Check out the AARDA website and Facebook page and get involved to raise awareness about autoimmune diseases.
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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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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. 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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Thanksgiving Thursday, Black Friday, Cyber Monday…and now Giving Tuesday. In this season of over eating and commercialism, it’s good to take a step back and think about how we can give. This second annual event is designed for people to give back to the community. When it comes to rheumatoid arthritis, there are many non-profit organizations to choose from. For me, it comes down to the following four factors:
- A focus on the patient.
- A focus on autoimmune-based arthritides (including rheumatoid and related diseases).
- A focus on research designed to improve patient care and develop cures/treatments.
- Fiscal and organizational accountability.
I find that three organizations meet these criteria.
The American Autoimmune Related Diseases Association. This organization focuses on autoimmune diseases exclusively.
The Arthritis National Research Foundation is focused on providing grant funding directly to scientific researchers.
The Rheumatoid Patient Foundation is the only non-profit organization exclusively devoted to rheumatoid disease with a focus on the patient.
Please consider joining the fight against rheumatoid arthritis by giving to these excellent organizations.
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Posted in Uncategorized, tagged autoimmune, Autoimmune disease, Autoimmunity, B cell, cell theraoy, Duke University, immune system, National Institutes of Health, Nature (journal), research, rheumatoid arthritis, treatment on November 1, 2012|
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B Cells and Antigens
A group of researchers at Duke University, with funding from the National Institutes of Health, have been working with a special type of B lymphocyte cell that they believe could eventually be used to treat autoimmune diseases. Their work was recently reported in the journal Nature.[i]
After reading this story, I had to get a refresher in the immune system. I have a degree in biology and this system remains difficult for me to fully understand. And full time researchers live in a complex world of their own nomenclature and symbols so off to the internet I went. When a foreign substance or germ enters the body, the immune system kicks into gear and recognizes the enemy and attacks it. This system is really amazing given the constant barrage of foreign invaders coming at us every day. Here’s a great website called KidsHealth that gives a nice overview of the immune system and the National Institutes of Health provides a more detailed explanation. When the system goes haywire and attacks itself, it’s called autoimmunity.
Central to the immune system are cells called lymphocytes. There are two types of lymphocytes, B Cells and T Cells. Many rheumatoid arthritis treatments are targeted at biochemical processes involved with these cells. To quote KidsHealth,
B lymphocytes are like the body’s military intelligence system, seeking out their targets and sending defenses to lock onto them. T cells are like the soldiers, destroying the invaders that the intelligence system has identified.
But some special types of B cells called regulatory B cells actually serve to suppress or dampen the immune system so it doesn’t get out of check. They turn off T cells keeping them from damaging one’s own tissues. Since they give off a signaling protein called interleukin 10, these cells are called B10 cells and they are quite rare in the body. This role in regulating autoimmunity garnered the interest of the researchers at Duke University as a possible avenue to treat autoimmune diseases like lupus, type 1 diabetes, and rheumatoid arthritis. Their first hurdle was to isolate and reproduce B10 cells. They discovered that they could create millions of B10 cells in the lab. They then put the cultured B10 cells into diseased mice. According to a press release from Duke University,
When a small amount of B10 cells were introduced into mice with multiple sclerosis-like autoimmune disease, their symptoms were significantly reduced, essentially turning off the disease. B10 cells will only shut off what they are programmed to shut off. If you have rheumatoid arthritis, you would want cells that would only go after your rheumatoid arthritis.[ii]
Such a treatment of injecting cells into the body in order to shut off autoimmune responses sounds like a wonderful thing. But the researchers point out that the immune system and autoimmune diseases are very complex and they are a ways off from making this a reality in humans.
Of course, one can’t get hopes up too high when reports like this appear. Thirty years ago the miracle of stem cells was touted as being able to cure all sorts of diseases. Yet it remains to become reality. But the notion of cellular therapy for rheumatoid arthritis is an interesting one and it brings hope that a cure may become a reality someday.
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