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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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Perhaps I spoke too soon. Rituxan infusions are supposed to be scheduled two weeks apart and the last one was received two weeks ago today. But today’s infusion was cancelled at the last minute by my rheumatologist due to side effects. Within a day of the last infusion, a series of ongoing migraines commenced. This was accompanied by nausea (I didn’t eat much for several days), achy joints (not the type of pain from RA but more akin to the flu), and just a general blah feeling. In the past I might experience 24 hours of flu-like symptoms but this far exceeded that. There are pre-infusion medications given in an attempt to alleviate side effects. For me these include acetaminophen (tylenol – for which I think the clinic charges $7.00!), 25mg of diphenhydramine (Benadryl) injected into the IV, and 80mg of solu-medrol (a corticosteroid) injected. These premeds did not help this time around.

A similar experience with Remicade infusions and methotrexate injections occurred in that ongoing migraines would result within a few hours or a day after receiving the medication. Working with my neurologist, a slew of prophylactic measures were attempted including promethazine (Phenergan) injections. Nothing seemed to work and the use of Remicade and methotrexate came to an end.

I’ve done well with Rituxan over the past 2.5 years. But it seems lately that the list of potential side effects are coming at me with force. These include infusion reactions, infections, low white blood cell count (my B cells are non-existent), body aches, and aching joints. According to the Rituxan website, one tip for infusions states, “Stay mindful of how you feel—even if you didn’t experience reactions in the past, they may still occur with future infusions. It’s important to tell your health care provider right away about any discomfort during or after treatment.” They also state, “Infusion reactions are the most common side effect of Rituxan treatment. Serious infusion reactions can happen during or up to 24 hours after an infusion. During clinical trials, less than 1% of people taking Rituxan experienced serious infusion reactions.”

A two month delay due to infections will now extend another month until an appointment with my rheumatologist to discuss next steps. Perhaps we’ll try Rituxan once again. Or maybe it’s time to move on to another treatment although the options are getting slim. Oh well…think I’ll go fishing tomorrow!

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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. IMG_0072Instead 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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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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When first diagnosed with RA over five years ago, I was prescribed oral methotrexate (MTX). After a month of taking the pills, I felt terrible and was basically non-functional. It felt like a truck ran over me as I had no energy, felt sick at my stomach non-stop, and had headaches. The RA symptoms were bad enough but this just added insult to injury. My rheumatologist finally told me that I clearly could not tolerate the drug and to stop taking it. The side effects subsided within a few weeks.

Several years later, and with a different rheumatologist, I asked about taking MTX injections because I was desperately trying to find a treatment combination that worked. It was recommended to add MTX with the biological medicines I was taking as the combination of the two typically produces better results. I started take methotrexate via weekly self-injection and found that the nausea side effects were much less than with oral pills. I seemed to tolerate the MTX much better when injecting it and adding both folic acid and leucovorin. I rarely felt nausea and did not loose any hair.

But an increase in migraine headaches over the past year coincided with the time I started taking MTX. While not one of the more commonly reported side effects like nausea or hair loss, headaches can come from taking MTX.[i] [ii] As my neurologist stated, the causes of the migraines are likely based on multiple factors including genetics, my fight with RA, and the medicines I take. During the past few months when the headaches increased in number, I completely stopped taking methotrexate in an effort to eliminate any possible triggers. We’ve been able to reduce the number of migraines through the use of gabapentin, a drug used for neuropathic pain, and botox injections (no, I don’t look any younger!). My rheumatologist suggested that I start retaking methotrexate by beginning with low doses initially and then increase back up to the dose I was taking before. I waited until I had been headache free for two weeks and then injected MTX. Within 48 hours I began to get migraines and fought off four bad headaches over the next five days. While it’s hard to determine direct cause and effect, this was enough for me to wonder if MTX was indeed a migraine trigger. I did not inject MTX the next week and did not have any bad migraines. I contacted my rheumy and she suggested I just stop MTX altogether. The good news is that during this time, Rituxan infusions that I started last September were starting to work at controlling my RA and this was during the time I had stopped taking MTX.

So for the time being, I’ll just stick with Rituxan as my main RA treatment. And I’ll be sitting in the infusion center this Wednesday starting my second series of doses.

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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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Yesterday was my second Rituxan infusion. Because of potential serious infusion side effects, receiving a Rituxan infusion is unlike any other RA biological treatment I’ve had to date (this is my 7th biological treatment).

The infusion clinic likes to schedule Rituxan infusions early in the day since the entire process can take up to 6 hours. My appointment was at 8:30 a.m. After checking in, a nurse took me to a semi-private room that contains a lounge chair, TV, guest chair, infusion pump machine, and a drawer full of equipment and supplies. The first thing the nurse does is to take blood pressure and heart rate baseline measurements. She then sets up an IV line in the vein of your choice. I usually choose a vein in the back of my hand as it allows me to move my arm if needed. But I’ve had IVs in various places on my arm since having infusions with other biologicals.

Rituxan requires a set of pre-medications that are designed to squelch possible infusion reactions. The pre-meds include tylenol, solu-medrol, and benadryl. The solu-medrol, a corticosteroid, is injected directly into the IV but the nurse does it slowly in order to avoid a “head rush” as she called it. The 100mg dose seems massive compared to the 4mg pills that I take periodically. This amount tends to keep me awake far into the next morning and makes me constantly hungry. The benadryl is an anti-histamine and is infused from a bag. The dose was 50mg. One side effect of the benadryl is that is can cause burning or pain in the arm as it goes in. This happened to me and the nurse put a hot pack on my arm to help relieve the pain. It subsided soon after the medicine was all in. Another side effect is that it makes me rather loopy and groggy and I slept for about an hour. The nurse said that we may be able to ask the doctor to only use half the benadryl and solu-medrol dose next time since it looked like I tolerated the Rituxan well. During my first Rituxan infusion, I also had 500mg of saline solution infused to make sure I was hydrated. They did not do this on the second infusion.

The entire set up and pre-medication routine took about 1 hour. During that time the pharmacist is preparing the Rituxan solution. I received a 1,000mg dose diluted in 500ml of saline solution. The infusion pump is carefully programmed to start the infusion slowly and pick up speed over time. The Rituxan was started at about 9:30 and wasn’t over until 12:30. This was actually an hour shorter than the first infusion when they go even more slowly to avoid infusion reactions. This is a long time to sit in a chair and I usually bring music, videos, books, and food to keep myself occupied. I get up periodically to stretch and go to the restroom. The entire IV and pump set up is mobile and can be wheeled around if needed. The pump is battery operated but must be plugged in when not moving so the battery can remain fully charged. The nurse periodically comes by to check on how I’m feeling. When the Rituxan bag is empty, a beeper on the infusion pump sounds and the nurse comes in to shut everything down and to remove the IV. Towards the end I found myself constantly checking the bag to see how close it was to being empty.

Other than the arm pain and sleepiness from the Benadryl, and the solu-medrol keeping me awake that evening, the process was pretty uneventful. But the grogginess and lack of sleep knocks me off for a day or two. A friend drove me home after the first infusion but after grabbing a cup of coffee, I felt fine driving myself home after the second one.

The dosing schedule is two infusions two weeks apart with another two infusions at either 4 or 6 months. This is a much different schedule than other RA biologicals which are typically given regularly every week or month. Now I wait for between 2-3 months in order to see if the Rituxan will have a positive impact on RA.

Below are some photos of the infusion.

IV with heat pack on arm

IV with heat pack on arm

Benadryl premed

Benadryl premed and saline

Rituxan

Rituxan and infusion pump

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