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Posts Tagged ‘NSAID’

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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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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20121205-061120.jpgI received an official rheumatoid arthritis diagnosis almost four years ago. In that period of time I went through multiple treatment schemes (see the My Meds page) including four biologicals (Enbrel, Cimzia, Humira, and Orencia) and three DMARD chemicals (sulphsalazine, methotrexate, and Arava) in addition to numerous NSAIDS and the obligatory prednisone. As mentioned in blog posts over the past couple of months, it became increasingly apparent that the combination of Orencia and Arava was just not working. Sticking my head in the sand and ignoring the signs could only last so long while my wife and doctor tried to convince me that it was time to try something else. The evidence was becoming overwhelming…unrelenting fatigue beyond comprehension, increase in the number and intensity of swollen and tender joints, new joints including one shoulder and both hips presenting with signs of attack by RA, missed work, and a level of brain fog never experienced before. In addition, it felt like the monthly Orencia infusions might just as well have been plain saline solution as there was no improvement afterwards. On top of that, Arava was wrecking havoc on my digestive system and the bathroom and I became quite friendly.

While driving into the doctor’s office today, the inevitable started sinking in and I got nervous wondering what would happen. Most of this anxiety is probably grounded in the fact that I’ve been through a slew of treatments and I was feeling like options were beginning to run out. After an exam and conversation about symptoms, my rheumatologist emphatically stated that it’s time to change treatment. She continually expresses hope that we can find a medicine combination that will work for me. She got out a piece of paper and made two lists. The one on the left was for DMARDS that I haven’t tried yet and she wrote down Imuran and Cellcept. On the right she listed biologicals that I haven’t tried and she listed Remicade, Rituxin, and Actemra. In the middle she listed the newly approved oral biological Xeljanz which she dismissed as a possibility for now stating that she wanted to see more long-term data on efficacy and safety before widely using it. She recommended Imuran since it’s been around longer and has better efficacy data for treating RA. Imuran is an immunosuppressant commonly used to help organ transplant patients avoid tissue rejection. It is also used to treat many autoimmune diseases including RA, lupus, and MS. Since three TNF blockers didn’t seem to work well for me, she argued against Remicade but said that we’d keep that option on the list just in case we want to try it later. She said that Rituxan helps some of her RA patients but not as many as she would like. Actemra is the newest antibody biological for RA approved in the United States and she said that she’s seen it help some of her patients. It’s different from the TNF blockers and Orencia in that it targets interleukin 6 which is part of the autoimmune processes linked to RA. So we landed on the Imuran/Actemra combination and await insurance approval to begin the infusions. A trip to the lab for blood tests to establish baselines were ordered. In the meantime, doses of prednisone are prescribed to knock down inflammation.

Changing treatments brings about many questions but also hope that maybe it will provide some relief. Because relief would be a good thing right now!

Creative Commons photo credit: http://www.flickr.com/photos/busy-pochi/5170100206/

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Three cities in three days…that’s been my recent experience as I’ve rambled across the country. Last Thursday, I got up at 4:30 in the morning to catch a 7:00 flight to Spokane for a board meeting and professional conference. After two busy days, I got home to Seattle Friday evening around 10:00 p.m. The following day I drove my daughter over the Cascade Mountains to a soccer game in Ellensburg, Washington. It was a glorious autumn day full of sunshine, sports competition, and turning leaves (at least on the non-evergreen trees). After church Sunday morning, I caught a five hour flight to Alexandria, Virginia for another work-related meeting. And it’s from Virginia on the other side of the country that I sit preparing this post pondering how RA affects travels.

Traveling can be stressful enough without battling RA. Getting out of routine, waiting in lines, sitting cramped in small spaces with crowds, changes in diet, and time zone differences can wear on anyone. But it can wreck havoc on someone with an autoimmune disease that increases fatigue. During these busy few days I’ve made a special effort to take time to relax and allocate energy and resources carefully. Not wanting to have a loss of sleep exacerbate things, I find that the judicious use of a safe sleep medication such as Ambien can work wonders.

That brings up another set of issues – traveling with medications. It just so happens that my scheduled injection of Humira is due while away. As a delicate genetically engineered protein, Humira must stay refrigerated. I carefully packed my auto-injector pen in a portable cooler and threw in three ice packs. I also made sure I had an alcohol wipe and bandage. I placed this in the middle of my clothes for added insulation and checked my bag figuring that it would last the seven some hours of total travel time. When I opened my luggage in my hotel room, it was still a perfect temperature. I quickly placed the medicine in the small fridge in my hotel room and it’s all ready for tomorrow’s injection. In addition to Humira, there’s the assorted other medications that must be brought along and I use a pill organizer keep in my carry-one bag.

With careful planning and preparation, things went swimmingly well. That was until late this afternoon when I decided to get some fresh air and go for a walk around Alexandria. As I returned to the hotel, I noticed my right Achilles getting painful and tight. By the time I got ready to meet colleagues for dinner, I could barely walk on it. Not able to take NSAIDS, I don’t have many treatment choices other than ice and rest. But I will likely blow off the ice since I don’t feel like tracking down the ice machine and finding a bag in which to put it. Based on prior experience and surgeries, I suspect that the tendon is tearing again. I’ll make adjustments and try to stay off it as much as possible knowing that this will be the first topic of discussion when I see my rheumatologist next week.

Thus far it’s been a productive and pleasurable set of excursions away from the comforts and routine of home. Prior planning and careful use of time and energy makes the difference between a miserable trip and an enjoyable one.

Photo Credit Creative Commons License http://www.flickr.com/photos/booleansplit/

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I’m at a loss about how to describe the various types of pain I’ve experienced with RA. As I prepare this post, all of my PIP finger joints (middle joint) are swollen and tender to the touch. The DIP joint (tip) on my left pinky smarts. The MCP joint (base of finger) on my left middle finger lets me know when I grab the steering wheel. Both wrists hurt when I flex them. My right elbow displays a sharp pain right above the joint. Both knees ache and crunch when moved. My calf muscles feel stretchy and stiff. Both Achilles tendons sting…the right one is bad enough that it was difficult to drive home from work today. The sides of my feet hurt when I press on them. While this day may not typical, one thing is certain…some sort of pain is always present with RA.

Sometimes I find it hard to pinpoint the source or cause of the pain. Yet my analytical mind wants to understand the underlying reasons. Perhaps knowledge can lead to pursuit of the right treatment. But it’s probably more curiosity than anything since my stomach can’t handle oral NSAIDs, I try to avoid taking inflammation-reducing prednisone as much as possible, and I tend to shun narcotic pain relievers for their side effects.

Pain is the body’s way to telling you something is wrong. According to one source,

“[Pain is] an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. While it is unquestionably a sensation in part or parts of the body, it is always unpleasant and, therefore, an emotional experience.”[i]

Pain can be classified as either acute – short term, or chronic – long term.[ii] While some RA induced pain may be acute, it can come and go depending on what joint is being affected, much of it is chronic. Pain sources can be nociceptive – caused from the stimulation of local nerve receptors, or non-nociceptive – caused by problems with the central nervous system.[iii] RA pain is nociceptive since it tends to be localized to various inflamed or damaged tissues. Nociceptive pain can be further divided into somatic – localized to an area resulting from damage to the musculoskeletal system, and visceral – non localized pain.[iv] With somatic pain,

“Patients may describe this as sharp, aching, and/or throbbing pain that is easily localized.” [v]

Pain associated with RA is typically chronic, nociceptive, and somatic. Management for this type of pain is facilitated through the use of analgesics like acetaminophen (Tylenol), non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, or narcotics.[vi]

Another type of pain caused when the nervous system is damaged, called neuropathic pain, may also be associated with RA. [vii] For example, the tingling sensation associated with carpal tunnel syndrome I’ve experienced lately is caused by pressure on, or damage to the median nerve that enters the hand.

With RA, the first and foremost goal is to treat the cause of the pain – inflammation. In this regard, my thought is, “Humira, do your thing so inflammation and pain is reduced.” If not, I’ll be forced to take more drastic actions such as treating the pain symptoms directly. That’s where my treatment options become less available. I guess I’m left with Tylenol, the hottub, topical Voltaren gel (an NSAID), and rest! If that doesn’t work, perhaps I’ll pull out the prednisone tomorrow. I’d prefer to treat the cause directly and not the pain symptoms. In the meantime, I’ll try “taking” some of those peanut M&Ms my daughter brought home for me from back-to-school shopping! 🙂

Photo credit: Creative Commons License http://www.flickr.com/photos/azariusrex/


[i] American Pain Society. Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain. 5th ed. Glenview, IL: American Pain Society; 2003.

[ii] http://www.texmed.org/Template.aspx?id=1462

[iii] http://www.ehow.com/about_5393798_somatic-pain-vs-visceral-pain.html

[iv] http://www.painbalance.org/nociceptive-pain-overview-1956304245

[v] http://endoflife.northwestern.edu/pain_management/part_one.cfm

[vi] http://www.medterms.com/script/main/art.asp?articlekey=10933

[vii] http://www.painbalance.org/neuropathic-pain-overview-2772791

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Just as RA symptoms seem to be under better control with Cimzia, other related medical issues creep in. This time it’s lingering side effects from NSAIDs.

Most of us over 40 remember those wonderful tasting, chewable orange aspirin pills. The distinct taste remains ingrained in memory. These days, sugary, fruity liquid versions of ibuprofen sit on the shelves of most parents. Such begins many people’s experience with NSAIDs. As a side story, when I was two years old, I ate a bunch of those orange pills and told my parents that “I took all of my medicine.” The story ends with a stomach pumping at the hospital and a federal requirement for child-proof medicine bottles.

Non-steroidal anti-inflammatory drugs (NSAIDs) are a commonly prescribed treatment for RA inflammation (see earlier post). In addition to taking aspirin as a child, I’ve taken massive doses of ibuprofen (up to 1,600 mg a day), tried naproxen, and celebrex during earlier stages of RA. Once a rheumatologist got involved, meloxicam and salsalate were tried since they are believed to cause less stomach problems. Meloxicam lasted two days before the telltale signs of stomach upset began so the anti-inflammatory effects were never felt. During the first ten days, salsalate did wonderful things for RA induced inflammation. Then one fine day, unspeakable stomach pain started. Use of acid blockers helped but things didn’t seem to get better. Finally, after almost four weeks of gastric suffering, I decided it was worth visiting a gastroenterologist. Within five minutes he suspected an ulcer and scheduled an endoscopy of the upper GI tract the next day. While the scope found irritation of the stomach and esophagus, no ulcer was visible. The doc intimated that an ulcer may have been present earlier but had healed. That was good news indeed.

This entire set of experiences are not surprising since the side effects of NSAIDs are clearly documented.

These effects are dose-dependent, and in many cases severe enough to pose the risk of ulcer perforation, upper gastrointestinal bleeding, and death, limiting the use of NSAID therapy. An estimated 10-20% of NSAID patients experience dyspepsia, and NSAID-associated upper gastrointestinal adverse events are estimated to result in 103,000 hospitalizations and 16,500 deaths per year in the United States, and represent 43% of drug-related emergency visits.[i]

Wow! That statement is frightening. On top of GI problems, NSAIDs are also linked to an increase in heart attacks and stroke. [ii]

Many arthritis patients are able to tolerate NSAIDs just fine and find relief from their use. But I must fall under that 10-20% who cannot. Therefore, “I vow to never take NSAIDs again!”


[i] http://en.wikipedia.org/wiki/Non-steroidal_anti-inflammatory_drug

[ii] http://www.webmd.com/rheumatoid-arthritis/guide/nsaids-rheumatoid-arthritis

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This post concludes the series on Weapons in the War Against RA Inflammation. The focus on inflammation is due to the fact that RA is a disease of chronic inflammation. Thus far we’ve  examined Conventional Weapons – NSAIDs, Nuclear Weapons – Steroids, Chemical Weapons– Methotrexate and others, and Biochemical Weapons – biological drugs. The arsenal in the war is vast but comes with pros and cons. 

The historical medical approach to treating RA seems to center on the use of drugs. Out of frustration with the lack of success of treatments, RA sufferers often look for other cures on their own. Indeed, some natural approaches to reducing inflammation may be worth trying. 

I classify natural weapons against inflammation into two categories, Ingested Substances and Physical Treatments. Ingested Substances include supplements, diet, and herbs. It stands to reason that one should be careful what you put into your body. Eating unhealthy food is unwise in general and certain foods even increase inflammation.[i] [ii] Some supplements like fish oil may even reduce inflammation.[iii] There may be interactions between supplements and medications so be sure to tell your doctor about everything you take. A few months ago, in response to reading about a possible relationship between diet and autoimmune diseases (see earlier post), I eliminated dairy and gluten for one month. I didn’t notice any difference before, during, or after this elimination diet. I’m glad because a daily latte is a must (maybe caffeine should be included on the supplement list)! I still try to eat as healthy as possible. I also take fish oil and use flaxseed on a regular, but not daily, basis. 

Physical treatments include procedures and substances applied externally and may include heat or cold, massage, lotions, stress management, physical therapy, exercise, and prayer. [iv] [v] Some of these treatments like heat, massage, and lotions have short term effects. There’s nothing better than spending some time in my hot tub each evening. And I’ll apply a topical to a flaring joint periodically. Stress management is a wise life skill for anyone but RA sometimes causes us to slow down. I think that’s our body’s way to speaking to us that it needs rest. I’m still struggling with that exercise thing and there are many conflicting views about it and RA. I regularly receive prayer for my RA symptoms. 

An examination of natural treatments must be tempered with a word of caution. Beware of quick cure schemes and tonics! Books, websites, and TV commercials are used to prey upon those who suffer from chronic diseases. Run a simple internet search for RA and you’ll find all sorts of claims like, “New breakthrough for arthritis discovered!”, “I was cured of arthritis. You can be too!”, and “Diet can send you into remission.” I apologize in advance for any reader who was hoping to find a miracle, natural treatment for RA in this post because it just doesn’t exist. This quote sums up my view on natural therapies… 

Alternative therapies are popular among people with rheumatoid arthritis, however, they should complement, not replace, conventional care.[vi] 

I offer the following words of advice based on the Weapons series: 

  1. There is currently no known cure for RA and anyone who tells you otherwise is wrong.
  2. Take your prescribed medicines. Particularly those that have a long term impact on RA-induced inflammation like methotrexate and biologicals.
  3. Be willing to try various medicines to see what works. When one doesn’t work or stops working, try something else.
  4. Eat a healthy, balanced diet.
  5. Speak with your doctor about any supplement you take.
  6. Live life with moderation.
  7. Use any safe method for short term relief of pain.
  8. Don’t fall for schemes that prey on the chronically ill who are desperate for a cure.
  9. Hold onto to hope as new anti-inflammatory treatments are always in the pipeline.

[i] http://www.webmd.com/diet/guide/anti-inflammatory-diet-road-to-good-health 

[ii] https://livingwithra.wordpress.com/2009/07/19/the-trio-of-triggers-of-autoimmune-diseases/ 

[iii] http://www.mayoclinic.com/health/rheumatoid-arthritis/AN00198 

[iv] http://www.webmd.com/rheumatoid-arthritis/guide/rheumatoid-arthritis-natural-treatments 

[v]http://www.umm.edu/patiented/articles/what_lifestyle_changes_can_help_manage_rheumatoid_arthritis_000048_10.htm 

[vi] http://altmedicine.about.com/od/arthritis/a/rheumatoid.htm

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