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.

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!

Back in the Saddle

My rheumatologist schedules Rituxan infusions for every four months. The suggested schedule is every six months but it can be reduced to four months in certain tough RA cases – like mine. A series of two infusions were originally scheduled for late June. But a battle with two serious infections, bacterial meningitis then C diff, put that schedule off by two months. During this time it was found from an expensive test, which had to be done at the local children’s hospital, that my B cell lymphocytes were none existent. This was not unexpected as Rituxan depletes B cells. It’s been quite a while but I darkened the doors of the infusion center last Friday and spent almost six hours for the slow drip – back in the RA treatment saddle. The next few days resulted in quite the post-infusion side effect ride with severe headaches, flu-like achiness, nausea, and fatigue. Now we’ll see if RA can be checked without anymore infections.

Even in the midst of not feeling well, I’m not going to let RA prevent me from the one outdoor activity that brings the most enjoyment – salmon fishing in Puget Sound. The salmon only run from the ocean to freshwater rivers once a year during the late summer-autumn. They hatch in freshwater, swim to the ocean, spend their adult life there feeding and growing, then swim back to the same place they were hatched to spawn. Shortly after spawning, they die as they stop eating after hitting fresh water. It’s an amazing biological process that never ceases to amaze. This year it was estimated that 6 million coho (silver) and 7 million pink salmon would be coming through Puget Sound. Three trips with friends on the water resulted 11 fish. I paid for the activity with pain and fatigue. But it was worth every moment and I’ll keep doing this every year as long as I’m able.

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368px-001U1253_Franklin_Gutiérrez_(cropped)Living in Seattle tends to make one root for the home sports team. The Seahawks have been to the Super Bowl the last two years and one the first one (and should’ve one the second if not for a bad last second call). I have my share of Seahawks gear, watch every game, and have been to a few including the game when they beat the Saints on a Monday night and set the record for loudest outdoor stadium. We won’t talk about the move of the Supersonics to Oklahoma City. But baseball is my favorite sport to watch both live and on TV. It’s America’s pastime – up there with hotdogs and apple pie. While I grew up watching the Kansas City Royals, I’ve taking an interest in the Seattle Mariners. They usually underperform, haven’t made the playoffs in years, and have never been to the World Series. But Safeco Field is a wonderful stadium right on the Puget Sound waterfront.

I follow the professional and personal stories of the players. Felix Hernandez-a perennial All Star and Cy Young award winner who was signed as a 16 year old in Venezuela, Robinson Cano-signed from the Yankees for a crazy amount of money, Kyle Seager – the hard working All Star third baseman who many scouts overlooked. And then there’s the long story of outfielder Franklin Gutierrez – or “Guti” as he’s know around here. He played for the Cleveland Indians for several years, was know for his speed in tracking down balls in center field, and was a decent hitter. The Mariners picked him up in 2009 and he immediately made an impression. He won a Golden Glove award as best defensive player at his position and announcer Dave Niehaus called him “Death to Flying Things”. But then he began to have a series of injuries that forced him to miss many games. He battled stomach issues that also kept him on the disabled list. Fans and sports writers began to question is ability to hold up to the rigors of major league baseball. In 2014, he told the team that he was taking the entire season off for “gastrointestinal/autoimmune problems”. The exact medical issues were not readily apparent to the public. Most of us figured that was the last we’d ever see him in a Mariners uniform. But last January he signed a minor league contract with the Mariners and was invited to spring training. He ended up on the Tacoma minor league team – a tough gig for a 32 year old former star. But he battled back and started to show streaks of his old self. Finally, on June 24 of this year, the Mariners called him back to the Major Leagues. While he doesn’t play everyday, he has started in the outfield at times and is hitting the ball well and with power.

With the call back to the major leagues, it finally came to light that Guti has been suffering with ankylosing spondylitis. This autoimmune disease is similar to RA in that joints are attacked by the body’s immune system. It’s treated with the same medications like biologics and DMARDs used to treat RA. This explains much of the struggles Guti has faced over the past few years. And it’s amazing that he’s made it back to the team. He stated,

It was hard, man,” he said. “I didn’t know what was causing pain in my joints and stiffness in my muscles. It’s something I’m going to have my whole life. It has treatment, but there isn’t any cure. It’s something I have to deal with every day.”[1]

Who knows how long he’ll continue to play baseball. But I hope that treatments work for him and he’s able to enjoy his passion as long as possible. For those of us who suffer from autoimmune arthritis, Guti is a real inspiration!

[1] http://www.cbssports.com/mlb/eye-on-baseball/25224153/franklin-gutierrez-back-with-mariners-for-first-time-in-nearly-two-years

photo credit: “001U1253 Franklin Gutiérrez (cropped)” by Keith Allison on Flickr (Original version) User UCinternational (Crop) – Originally posted to Flickr as “001U1253″Cropped by UCinternational. Licensed under CC BY-SA 2.0 via Wikimedia Commons

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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