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 Arava, Azathioprine, bacteria, CDC, Centers for Disease Control, Cimzia, corticosteroids, enbrel, humira, immune system, immunocompromised, immunosuppressed, infection, methotrexate, Orencia, RA, remicade, Rituxan, Simponi, vaccine, virus on August 30, 2013|
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Ever since the H1N1 swine flu scare a few years ago, I make it a point to get a flu vaccine every autumn. When receiving a regular physical exam from my general practitioner last week, the doctor suggested that a pneumococcal polysaccharide vaccine be added…
To check out the rest of this post, go to the newly launched website rheumatoidarthritis.net. I will be writing posts for this site periodically as a Patient Advocate and will continue to make regular posts at this personal blog.
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A recent blog post from Lene got me thinking about an appointment with my rheumatologist tomorrow. Since follow-up appointments are limited to 15 minutes (which cost about $250 – another story for another day), it’s important to plan ahead in order to maximize the time. Since there can be many issues and symptoms with RA, doctors probably want to focus on the most important issues. And the most important issue is how effective the RA treatments are working. If they are working well, all other issues will be minimized.
As issues occur or come to mind, I will jot down notes in my smart phone. The day before the appointment, I will review the notes, edit them, and prioritize the issues. Below represents the list for tomorrow’s appointment. I will open this list up on my phone and make sure to raise the issue if it doesn’t naturally come up in the conversation.
1. How well is the Actemra/Azathioprine combination working? I predict that this will automatically be the first question my rheumy will ask since this follow-up was scheduled to check on the impact of doubling the Actemra infusion dose.
2. Should I increase the dose of azathioprine to 100mg? The last time I tried, it caused severe nausea. Can I try 75mg or take 50mg twice a day.
3. My left hip hurts constantly whether sitting, walking, or lying down. The cortisone shots a few months ago did not help. Perhaps this will be taken care of if inflammation can be controlled with medication.
4. What should be done about the elevated cholesterol levels caused by Actemra?
5. A recent prescription was delivered with confusing dose instructions and I need clarification.
In addition to the issues above, my list also contains another task to address while at the clinic. I need to stop by the business office to pay off my recent Actemra infusion bills using the co-pay card.
There were several other issues that didn’t make the cut for tomorrow’s appointment.
1. There is fluid and some pressure in one ear which may be an infection. This can wait and I can always see my Ear, Nose, Throat (ENT) doctor who performed the recent sinus surgery or I can go to an urgent care if needed.
2. My fatigue levels are very high. But this will also likely get addressed automatically if the RA treatments are working.
I’m a linear thinker and very task oriented and I want to get the most out of these expensive appointments that are also taking time out of my busy day. This can cut down on follow-up phone calls, emails (best thing my doctor does), and lingering questions.
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Posted in Uncategorized, tagged Actemra, Azathioprine, biologicals, energy, Imuran, pain, rheumatoid arthritis, rheumatologist, stiffness, treatment on February 19, 2013|
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I started Actemra infusions in early December 2012. After trying four biological treatments over the past four years – Enbrel, Cimzia, Humira, and Orencia – I tried not to get too cynical about the potential outcome. At the same time Actemra infusions began, my rheumatologist put me on a different DMARD – azathioprine or Imuran. We started at the lowest possible dose of each – 4mg per kg of body weight of Actemra for monthly infusions and 50mg a day for azathioprine. A dramatic impact began about 3 weeks after the first infusion. The change was almost overnight. Within a 24-48 hour period, my energy levels skyrocketed and joint pain diminished. My wife immediately noticed the change for the better. Sleep was more refreshing, the ability to do work increased, stiffness was almost non-existent, and I wasn’t a slug by dinner time. A real treat was the three times I got on our elliptical to exercise for 20 minutes – it had been almost four years since I last exercised!
But as quickly as the amazing results came on, they began to fade away. By the time of the 3rd infusion, I was almost back to the place where I started. Energy levels and lack of joint pain were tracked on a scale of 1-10 and the graph pictorially depicts the results. At the same time this was occurring, we noticed a dramatic increase in cholesterol levels and blood pressure which coincided with the start of Actemra. According to the Actemra prescribing information, increased cholesterol and hypertension are common side effects.
My rheumatologist is a very knowledgeable and compassionate doctor. Her goal is remission and she will try whatever it takes to get there. While driving to an appointment this morning, I began to wonder if I had seen the last of Actemra. The choices are getting slim – really only Rituxin and the newly approved Xeljanz. But she said that I was on the lowest dose of both Actemra and azathioprine. So, we’re doubling down on both in an effort to recapture those golden moments experienced in January. We’ll try 100mg of azathioprine daily and 8mg per kg of body weight of Actemra infusions monthly. Of course we’ll continue monitoring cholesterol and blood pressure. I’ll keep plotting the results and see the outcome of this latest experiment.
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