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 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 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 biologicals, headache, infusion, injection, methotrexate, migraine, RA, rheumatologist, Rituxan, side effects on February 11, 2014|
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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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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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