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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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 anesthesia, CellCept, migraine, narcotics, orthopedic surgeon, RA, rheumatoid arthritis, Rituxan, Rituximab, surgery, tendon on February 10, 2015|
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Last Friday brought a 6th surgery in the past seven years. This is remarkable given the fact that the first 46 years of my life were relatively healthy with no major medical procedures. All surgeries have been connected with rheumatoid arthritis. Friday’s surgery was an outpatient procedure on the right elbow designed to remove damaged tendon and bone and to reattach tendon to the joint. It’s been an ongoing battle with both elbows for the past 18 months but other RA issues, primarily neck surgery and recovery last spring, took precedence.
The orthopedic surgeon who conducted the procedure specializes in hands and elbows. He said that he’s done numerous surgeries on the elbow and my tendon was one of the worse cases he’s seen. Healthy tendon tissue is typically smooth, white, with parallel lines. He characterized mine as mushy, gray, and undefined. After clearing out the tendon and removing damaged bone tissue, the remaining tendon was connected to other nearby healthy tendon. Holes were drilled in the bone to hold suture anchors that were used to reattach the remaining tendon to the joint.
The procedure was scheduled for early afternoon. After a long wait where drinking and eating were not allowed since the previous evening, a nasty migraine began to set in. The nurses stated that this is common due to dehydration. Lack of coffee probably didn’t help. They increased the saline drip line and provided a bag of ice. After waking from anesthesia, the migraine completely vanished. This was the easiest postoperative recovery in that there was no nausea or pain at the surgery site. The anesthesiologist said that he would just use infused anesthesia and avoid gases and narcotics that cause nausea. The surgeon used local injections of anesthesia to block pain. These lasted for at least 12 hours. Percocet, a combination of oxycodone and acetaminophen, is helping keep pain in check.
The arm was immobilized from above the elbow to the fingers. The dressing was changed after three days and the stitches will be removed after 10 days. Occupational therapy will begin at two weeks to slowly regain movement and strength.
There’s never a dull moment with RA and this episode is just part of the ongoing battle. After knowing that the surgery will be infection free, I will begin another part of the battle by adding a new drug called CellCept alongside current Rituxan infusions.
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Posted in Uncategorized, tagged achilles tendon, anchor suture, CellCept, cortisone injection, DMARD, enthesis, occupational therapy, plasma-rich platelet injection, PRP, RA, rheumatoid arthritis, Rituxan, Rituximab, surgery on January 3, 2015|
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So much for a new year’s resolution to avoid surgery in 2015. Surgery on my right elbow is now scheduled for February 6th – we’re waiting until after my son’s wedding at the end of the month. This will be my 6th RA-related surgery. Both elbows give fits including persistent pain and tenderness but the right one has been the bigger beast probably because I’m right handed. In August 2013, first symptoms were noted. An MRI in October 2013 showed a 50% tear in a tendon. Enthesitis is the term for damage in an area where a tendon connects muscle to bone and such soft tissue damage is common in rheumatoid arthritis in general an in my case specifically. The orthopedic surgeon gave a cortisone steroid injection in November 2013. Occupational therapy was done from December 2013 to February 2014 but it was stopped as progress was not realized. Finally, in November 2014 a novel platelet-rich plasma injection was tried to no avail. The orthopedic surgeon, who specializes in hands and elbows, said that all conservative treatments failed to help and surgery would be required. He indicated that the surgery would include an incision across the elbow, removal of the damaged tendon, shaving off damaged bone tissue, and using anchor sutures to reattach healthy tendon to the bone. Anchor sutures involve drilling holes in the bone and inserting anchors which hold special permanent suture material. The arm and wrist will be immobilized for a few weeks. Occupational therapy is already scheduled starting two weeks after the procedure. My rheumatologist wanted to add a new DMARD, CellCept, to help with Rituxamab infusions. But now we’ll wait until after surgery to help avoid any infection complications.
While surgery is always a last effort, it’s time to take care of this ongoing issue as the pain is non-stop and use of the arm is limited. Updates will be posted as the process unfolds.
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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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It’s December 23rd and most people are likely spending the day baking Christmas goodies, purchasing that last minute gift, wrapping presents, picking up family at the airport, traveling, or engaged in some other holiday related activity. Not me as I’m sitting in the infusion clinic. I know the place and nurses very well since I come here for RA infusions. But today I’m not here to receive Rituxan which is my current RA biological medicine. I’m here because 11 out of the last 13 days have been spent dealing with chronic migraine headaches. Everyday there’s a low grade headache lingering all day long and then a migraine comes on rapidly usually in the early morning. I have to quickly take an abortive medicine like Imitrex and lay down in a quiet place to rest. But after two weeks of this, my neurologist wanted me to come into the clinic for an infusion of a cocktail of dihydroergotamine (DHE), phenergan (an antihistamine), and decadron (a corticosteroid) in order to put a stop to the migraine cycle. I had this same cocktail last year when taking Remicade and it works very well. I also started on a strong preventative medicine called topiramate (Topomax) about two weeks ago and that can take up to one month to begin working.
My neurologist believes that I already had a genetic propensity for migraines as I used to get them several times a year. But since dealing with RA, they seem to be rearing their ugly head more often and he believes that the combination of dealing with RA and the drugs I’m taking to combat the RA are contributing to the increase in migraines. I first noticed headaches when taking Humira years ago and then they came with a vengeance last year when taking Remicade. This lends some evidence that the RA medications may be a contributing factor in my case. Humira and Remicade are in the same class of RA drugs – TNF blockers – and both list headaches as a possible side effect. But I’m currently on Rituxan which is not a TNF blocker and acts on a completely different part of the biological process involved in RA. Methotrexate also lists headache as a possible side effect. I’ve temporarily stopped injecting methotrexate until we get these migraines under control. This experience makes me question long term RA treatment but that discussion will wait until later in January when I see my Rheumatologist. In the meantime, shaking the headaches is the short term goal.
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Posted in Uncategorized, tagged B Cell lymphocytes, CD20, enbrel, fatigue, humira, rheumatoid arthritis, Rituxan, Rituximab, stiffness, swelling, tendon tear, TNF inhibitor on December 10, 2013|
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I had a follow-up appointment with my rheumatologist to see how the Rituxan/Methotrexate combination is working. Since the time I started Rituxan, an MRI of my right elbow revealed a 50% tear in a tendon and active inflammation in the joint space. A cortisone shot from the orthopedic surgeon seems to have calmed things down for the time being. My right ankle displays regular sharp pain feeling much like it did a couple of years ago when I had surgery to remove bone erosion and repair soft tissue damage. Under examination from the rheumatologist, my toes were tender and painful – something I never noticed since I don’t regularly inspect my toes. I still experience considerable overall stiffness, joint pain, and fatigue. But the good news was that my rheumatologist noticed that I had less tenderness and swelling in my finger joints (it amazes me how she distinctly remembers such things). I agreed as I had noticed the same thing. My wife, one of the best and objective observers, also noticed some improvement over the past few weeks.
When I started other biological treatments, it was pretty clear whether or not it was working within the first few weeks. But that is not the case with Rixutan. Unlike anti-TNF drugs like Enbrel and Humira that can work more quickly, the full effect of Rituximab may not be seen for 16-24 weeks (National Rheumatoid Arthritis Society). My first Rituxan infusion was on September 23rd and I’m sitting at about 11 weeks since I started. According to the Rituxan frequently asked questions (FAQ) website,
“At the time of their first checkup—8 weeks after starting treatment—many of those people had seen an improvement in their symptoms. And 6 months later, many were still experiencing improvement.”
The hope remains that this combination will continue to cause an improvement in symptoms. My rheumatologist believes that with the RA out of control for so long, it may take some time for a treatment to catch up and put out the inflammatory fire.
Rituxima Binding to CD20 on a B Cell Surface (Photo credit: NIAID)
In this fast-paced, electronic society, we demand everything instantly. It’s difficult to wait for a treatment to take effect. But with the complex biological processes involved with rheumatoid arthritis, the immune system, and Rituxan, we must be patient. While scientists aren’t completely sure about the exact details, it is believed that Rituxan works by depleting the production of B cell lymphocytes by targeting an antigen called CD20 (see graphic) (Pescovitz, 2006). Since B cell production takes time and Rituxan only works on a portion of the production line (see graphic below from the Rituxan website), it stands to reason that it will take time for the therapeutic action to take hold. Slow and steady, hold the course, wait and see…these are all operative words at this time.
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