More on Choices…

In 2012, I came off Methotrexate (MTX), a powerful DMARD (disease-modifying antirheumatic drug). It’s widely considered to be the gold standard for treating severe RA, often in conjunction with one of the biologics you see in those unrealistic, misleading pharmaceutical ads. And this combination was occasionally somewhat helpful in controlling my symptoms. I know, “occasionally somewhat helpful” is not a ringing endorsement. But I’m six years in, and I’ve not found any combo of drugs that has given me more than 30% relief.

If this drug was a key part of my best cocktail, why did I stop taking it? Well, as users of MTX know, liver toxicity is a serious concern. So, along with the weekly injections, patients require regular liver checks, also known as monthly blood work. Yep, it’s pincushion central. And my liver function tests took a nosedive in July of that year. So, my rheumatologist took me off immediately.

Fast forward to today. It’s February 2016, and I’m desperate for something that will get me any relief from the crushing pain and extreme fatigue. Unfortunately, I’m mostly out of options. My last biologic stopped working, and because it’s Rituxan, I have to wait four months for it to exit my system to try another. (Aside: I’m running out of “others” to try, but that’s a ‘Choices’ post for another day…I smell a series here!)

While I wait, my best option is to restart a drug that has already proven itself to be detrimental to my liver. I’ll take every precaution, and my doc and I will be paying close attention to that particular organ. But my quality of life is paramount, so if there’s even a chance it’ll help, I’m taking it. So, tonight, I’ll be back to Thursday evening injections and Friday MTX hangovers. It’s a different kind of #tbt. That’s Throwback Thursday, for those not versed in the lingo. I’m not posting a picture on Facebook, but I thought I’d share it with you, dear readers. I don’t think it would make sense to anyone else.

WP_20160204_17_10_41_Rich_LI

Ain’t no party like a Methotrexate party…

 

Advertisements

Pharmaceutical Roulette

 

When you are diagnosed with a chronic disease like Rheumatoid Arthritis (RA), you quickly learn that your life is destined to include medicine.  For many of us, lots of medicine.  Back in 2010, I bought a “days of the week” pill sorter, and I’ve adapted to the weekly ritual of filling it, counting and sorting each medication.  Believe me, when you are battling RA, your hands cannot afford to open 10-15 pill bottles twice a day.

My trusty pill container. I never leave home without it!

I’ll admit that it was tough to adjust to a life of medicine.  What’s more difficult though, is the realization that successful treatment for my illness, and many others, is very much a trial-and-error process.  Until we experience serious illness, many of us believe, naively, that our doctors have the answers.  At least, I know that’s what I thought.  You get sick, you go to the doctor, they diagnose, they prescribe medicine, you take it, and you feel better.  Right?  Wrong.

I am three years into my RA journey.  I see my rheumatologist monthly, and have regular visits with a pain management specialist, a hematologist, a neurologist, an ophthalmologist, and a cardiologist – all for related symptoms and issues.  In other words, I am not neglecting my treatment.  Regardless, my doctors and I still do not have a working treatment plan.  I have continually active disease, joint damage, bone erosions, and nothing (so far) is stopping the march of RA and its autoimmune friends through my body.  What follows is a chronicle of my game of pharmaceutical roulette.

January 2010: Diagnosis
Med Count: 6

For immediate relief, I was put on steroids.  Medrol, to be exact.  I’ve stayed on it for almost 4 years, fluctuating between 4mg and 32mg a day.  Currently, I’m at 14mg a day, which is still far too high for a maintenance dose.  This drug does nothing to stop the disease.  It simply reduces inflammation and pain.  It also carries lovely side effects like weight gain (check), moon face (check), excessive  sweating (check), and adrenal insufficiency (check).  As my friend Dennis would say, it’s a gem. 🙂 But, it keeps me mostly functional, so I keep taking it.  Of course, the goal is to find something that works on the disease  itself, so I can come off my maintenance dose, especially given the long list of side effects.

At the same time, my doctor started me on an anti-malarial called Plaquenil, a common treatment for RA.  She also found that I had extremely low levels of vitamin D (common in those with autoimmune disease), and put me on supplement therapy.  The hope was that these, taken in combination with Celebrex for pain, would begin to control my disease.

The count is six, by the way, because I was already on a beta blocker for my inappropriate sinus tachycardia and Restasis for chronic dry eye.

March 2010: Injection Time!
Med Count: 9

Unfortunately, this combination did not work.  So, I was introduced to a class of drugs called disease modifying anti-rheumatic drugs (DMARDs).  I started with methoxtrexate, which is the gold standard for RA treatment.  I started taking the injectable form of this in March 2010.  It offered a bit of improvement, though my disease continued to be active.

Methotrexate has this nasty habit of removing folic acid from your system, so at the same time, I was put on a prescription dose to replace it.  By this time, I had been on Medrol for three months, and since long-term steroid use can cause osteoporosis, I began taking Fosamax to prevent that side effect.  So far, I have only osteopenia, so I guess it’s working.

June 2010: IVs…Really?
Med Count: 10

When methotrexate alone was not effective, my doctor added my first biologic treatment, a monthly IV infusion of Orencia.  It should be noted that I was not coming off anything I was on at this point.  This was all about adding to what I was taking, trying to find the right biologic and combination of the rest to get my disease under control.

The selection of Orencia was largely a guess.  I had some symptoms that made me high risk for developing multiple sclerosis, which kept my doctor from suggesting the most popular class of biologics.  This was the next best choice, so we gave it a shot.  For the next 6-8 months, I did improve, but probably only 5-10%.  Even with all of the meds I was taking, my doctor increased my steroid dose every few months, to manage my swelling and pain.

At this time, she also prescribed my first more intense pain reliever, called Tramadol.  This provided some additional relief, and on this cocktail, I was able to continue working.  I mostly collapsed every evening and on weekends, but I survived.

Nov 2010: Narcotics Time
Med Count: 11

When I got to the point that I was taking multiple doses of Tramadol every day, my doctor gave me my first narcotic, Vicodin.  We hoped that, with another steroid increase and some stronger pain meds when I needed them, I might need fewer pain meds overall.  Vicodin didn’t help much, so I rarely used it.

March 2011: Allergies
Med Count: 13/12

Eight months into my treatment with Orencia, my disease remained active.  So, my doctor added sulfasalazine and another DMARD called leflunomide.  I handled the first just fine, but had a very bad reaction to leflunomide.  As soon as I added it to my regimen, I was very ill; unable to keep down a meal.  So, that was out as fast as it was in.

It was also this month that I discovered my gluten intolerance.  Minimizing the gluten in my diet has been quite helpful to my digestive system, and has helped me pay very close attention to every ingredient of every food I buy and eat, which is a great thing for me and my family.

September 2011: A New Infusion
Med Count: 13

In July, my doctor and I determined that we needed to move on from Orencia.  These drugs are extremely expensive, running $2000+/month, so unfortunately, the insurance approval process can be lengthy.  Even with my insurance (which is great – I am very blessed!), it took two months to get my approval for Actemra.  Once on a new drug, it can take anywhere from 3-6 months, and sometimes longer, to know if it is working.  So the trial-and-error process is long, arduous, and ultimately, very frustrating.  When I finally began Actemra, one of the newer biologics on the market, I just hoped it would work.

In the meantime, my maintenance dose of Medrol was increased all the way to 32mg a day, in an attempt to keep me functional.  Additionally, I signed a DEA contract, yes – that’s Drug Enforcement Agency, with my doctor for a long-term prescription for Percocet.  In another post, I’ll delve into the humiliating processes required by law for chronic pain patients to get the pain relieving drugs they need.  Suffice it to say, there is substantial room for change.

January 2012: New Year, New Surprises!
Med Count: 15

Biologic drugs weaken the immune system overall, and its ability to fight infection.  After the holidays, I spent time in the hospital, in septic shock from a deadly (for me) combination of a back-to-back common cold and stomach flu.  My blood pressure was dangerously low, my heart rate was dangerously high, and my weakened immune system couldn’t fight without vasopressors administered through a central line.

Unable to move, unable to get out of bed for weeks (even before my hospital stay), I was forced to go on disability from a job I love.  My health was very, very poor, and I wanted answers.  Actemra wasn’t working, and nothing else seemed to be either.  My doctor suspected I had developed fibromyalgia on top of my RA.  When I went to Mayo Clinic for a rheumatology evaluation that month, they agreed with her.

So, I started Cymbalta and Topamax for the fibromyalgia pain, and started seeing a pain management specialist for more treatment options.

June 2012: My Body Rebels, Part 1
Meds 14

I’ve been anemic for a couple of years now, but in May, my regular blood work started showing more severe levels.  So, I got more results, and found that my red blood cells were large, and that they were being destroyed more quickly than they should, a condition called hemolytic anemia.  So, my hematologist and rheumatologist took me off one of my drugs, sulfasalazine, and I started getting additional monthly blood work to check for improvement.

July 2012: My Body Rebels, Part 2
Med Count: 13

The very next month, my liver function tests were abnormal.  So, after 2+ years on methotrexate, I had to stop taking it.  This was a difficult thing to accept, for two reasons.  I was first and foremost concerned about my liver.  I put a lot of stress on it with the medications I take, and hearing that it is behaving abnormally is worrisome.  I also knew that the drug I was giving up was one that helps many people with RA, and I worried about what it meant for my treatment plan.

Also, it was this month that I officially failed Actemra.  Aside from the fact that I now had to restart the 2 month insurance approval process, followed by the 3-6 month “will it work?” process with a new drug, I had another problem.  The remaining biologics available, and the ones most likely to work, were also the ones most risky for me.  Called tumor necrosis factor (TNF) blockers, they consist of the best known and proven biologics on the market: Enbrel, Humira, Simponi, Cimzia, and Remicade.

I had avoided these drugs because they carry a higher risk of developing multiple sclerosis.  I have a number of symptoms that make me high risk anyway, so I elected to stay away from these drugs.  However, Lora and I discussed the options, and decided, despite the risk, to try one.  My doctor documented the contraindication as well as my decision, and fully supported me.   We started Humira, as it seemed to best fit my blood work and profile.  I took a deep breath, and hoped for the best.

September 2012: Double it!
Med Count: 13

The good news was that my approval for Humira took only a week.  After a month though, it wasn’t doing much of anything.  So, my doctor doubled my dose in September, and I started weekly injections.  Within a week, I started to see real improvement in joint pain, stiffness, and fatigue.  It had been almost a year since I had felt anywhere close to this good, and I was thrilled!

October 2012: The Itchy and Scratchy Show
Med Count: 12

Well, the excitement didn’t last long.  The morning after my second weekly Humira injection, I woke up covered in hives.  I knew immediately.  It was an allergic reaction to the drug, and it was devastating.  I got into my doctor right away.  She confirmed, and got me a Medrol-Pack (extra steroids to knock out the allergic reaction in my blood), and some prescription strength Benadryl for my insane itchiness.  As far as a biologic, we decided to try Enbrel, hoping that I would have a different outcome.

My liver functions were still abnormal, so I came off Celebrex, in the hopes that would normalize things.  Otherwise, I was about to add a gastroenterologist to my list of specialists.

November 2012: The Scratching Continues
Med Count: 11

Anyone know the lucky number?

As it turns out, my body and anti-TNF biologics do not get along.  I broke out in hives after my third weekly Enbrel injection, and I’m still battling them as I write this.  I’m starting my second Medrol-Pack with these hives, and still taking anti-itch meds.  My skin feels like sandpaper, and is covered with scabs, though I try as hard as I can not to scratch.

The good news is that my liver function has returned to normal, at least for now.  But, I will not be trying further biologics from this class, which means my options are limited.  Luckily, there is a brand spanking new biologic pill, just approved by the FDA two weeks ago, called Xeljanz.  My doctor and I are meeting on Wednesday, and will be discussing whether I can try that.

I know today’s story is long, but I hope it sheds light on what those with RA face in finding a successful treatment plan.  Ultimately, my number hasn’t come up on the roulette wheel, and in terms of biologics, I’m running out of chips.  The good news is that I have the amazing support of Lora, Bear, our families, and good friends to guide me.  I am confident that by combining pharmaceuticals, healthy eating, meditation, exercise, alternative therapies, and most of all great support and a positive attitude , I will find my way to the winning number eventually.

In the spirit of this week’s holiday, thank you for making your way through my pharmaceutical journey, and for continuing to share and learn with me.  Happy Thanksgiving to you all!

Meningitis and the 2012 Presidential Election

November 6th is just 12 days away, and depending on early voting in your state, your time may already have arrived.  So, I’d like to throw out my endorsement. I know you all have been holding your breath. 🙂 I suspect this:

A)    Will come as no surprise to those of you who know me well.

B)    Will have a slightly smaller impact than that of Former Secretary of State Colin Powell.

My President speaking in my city (Tampa, FL) today!
Photo credit: Scout Tufankjian for Obama for America

There are many, many reasons why I support President Obama again this year.  I believe he is helping to move the economy in the right direction.  He is the only choice for supporters of equal rights for women and LGBT Americans.  Lora and I just got married, but according the federal government and the state where we live, we are no more than strangers!  I could go on for days, but for the purposes of this post, I want to focus on one thing.  Healthcare.  Do I think “Obamacare” is perfect?  Absolutely not.  Do I think doing nothing is infinitely worse, for business, the economy, and especially for Americans?  Absolutely.  To illustrate this, I share my perspective on one current news story.

You have probably heard about the fatal meningitis outbreak caused by tainted methylprednisolone.  As of now, 317 people have been infected, and 24 have died.  It’s horrifying.  This drug is one that many with uncontrolled or flaring rheumatoid arthritis, including me, take daily.  In this instance, the injectable form was used in a procedure called a cervical epidural spinal injection, designed to reduce inflammation, and therefore pain, for a number of different debilitating conditions.

I have had multiple of these injections; my last in June 2012.  It is only by sheer luck that my pain management doctor did not use this compounding pharmacy, or I could be a statistic.  As you might imagine, this sobering fact hit me pretty hard.

If you’ve followed the story, you know that a compounding pharmacy in New England was responsible, and though not regulated by the FDA, this pharmacy and others like it are inexplicably providing these drugs.  This is unacceptable and must change.  Regulations are not optional when human lives are at stake.  Period.

Especially as a “frequent shopper” of the health care system and its pharmaceuticals, I wondered how we got to the point where this could happen, so I dug deeper.  I quickly found the short answer: drug shortages.  These compounding pharmacies are, quite simply, filling a need in the marketplace, something my business brain can understand.  However, given that we’re discussing medicine, and not just any old product, my human brain cannot comprehend.

The reasons for drug shortages are varied and complicated, but there is a glaring one that stands out: corporate profit.  Most of the drugs on the shortage list are older, generic drugs, which don’t make their manufacturers much money.  As an example, there is an older chemotherapy drug, commonly used to fight leukemia in children, called methotrexate that has been on and off the list for the last year.  You may recognize this one from my “Defying Gravity” post, as it is also the most common drug used to treat rheumatoid arthritis. I was affected by the methotrexate shortage about six months ago, as were with thousands in our community. It may not seem like a big deal, until you consider what it would be like to be unable to work or even get out of bed without those drugs. Economic cost indeed.

Methylprednisolone is another, and when FDA- regulated manufacturers didn’t produce enough of the drug to care for patients, compounding pharmacies jumped in to fill the demand.  The result was devastating for hundreds, and to this point, fatal for 24 Americans.  Was lack of corporate profit the only reason for the drug shortage?  Probably not, but it is one very ugly, very alarming part of a complex issue.

And President Obama is the only candidate working to fix it.  A key piece of the Affordable Care Act limits health care companies’ administrative, marketing, and other non-medical costs.  The goal of this is to ensure that the majority of patient premiums are spent on patient care, not kept as profit.  Hopefully, when profit is limited at this step in the supply chain, we will see fewer drug shortages due to lack of corporate profit.  Furthering the solution to this epidemic, the FDA Safety and Innovation Act was signed into law in July.

These solutions are not complete, nor are they foolproof.  They will most certainly need to be adjusted and improved over time.  But after decades of doing nothing while health care costs and corporate profits skyrocketed, the Affordable Care Act represents a bold first step in the right direction.  Additionally, the law provides health care coverage to millions more Americans, as well as those with pre-existing conditions (you know, like Rheumatoid Arthritis), regardless of income or employment status.

He’s got my back, so I’ve got his.
Photo credit: facebook.com/barackobama

Compare our President’s plan to that of Mitt Romney. The former Governor of Massachusetts passed health care reform for his state in 2006, and it has been a success.  Instead of promising to fight for all Americans by further implementing or even improving the Affordable Care Act, his vision for the country involves immediately repealing it.  In its place, he’ll keep the most expensive form of taxpayer health care we have.  Newflash, Governor Romney: emergency rooms don’t cover chronic conditions.

Only one candidate in the 2012 Presidential Election is working for America on this critical issue.  President Obama passed major health care reform in his first term, and will fully implement if granted a second term.  Unfortunately, nothing can save those impacted by the horrors of the meningitis outbreak.  I’m praying for the sick, for the families of those lost, and for an end to the new cases.  Now, we can only hope to learn from this disaster. It starts with our choice on November 6th. President Obama’s got my back, so I’ve got his.

Defying Gravity

Today is Monday. The day all we get back in the saddle.  The day of aching ears, as we run a marathon of back-to-back-to-back conference calls (well, at least that’s true where I work).  Usually, it takes an extra cup of coffee to get through it all.  For me, it’s also the day I inject myself with methotrexate.  This medication was first introduced in the 1950s, and was originally developed as a chemotherapy drug.  Now, it’s also commonly used to treat moderate-to-severe Rheumatoid Arthritis.  And when I first learned that I needed the injectable one, I was petrified.

You see, I have always had needlephobia. Through a lifetime of routine tests, blood donations, a pregnancy, and a couple of surgeries, I’d never once watched a needle penetrate my skin.  The thought that I’d have to inject medicine into my own body every week made me, to say the least, very nervous.

My nurse was very patient (I admit, bad pun intended :)), teaching me to fill a syringe using saline and allowing me to practice by injecting an orange a few times.  Eventually, the moment came when I had to prove that I could do it.  On myself.  By myself.  With shaking hands, I filled the syringe with the yellow liquid, carefully tapped out the air bubbles, and tried to remember to breathe.  I then sterilized a small area on my belly, positioned the needle, took a deep breath…….and pulled away.

Nurse Yvonne was wonderful and encouraging, reminding me how well I did with the fruit.  Of course, the orange did not have RA, or any ability to feel the pinch of the needle, so it was just slightly easier.  Panicked, I asked her for a moment alone.  When she left the room, I closed my eyes and dropped into a brief meditation.  What would it mean to have some movement back in my body?  To me, to those I love?  What would I do to make that dream a reality?  I sang a favorite song to myself, “Defying Gravity” from “Wicked” (my go-to inspirational song).  I pictured all I had recently faced and how far I had come.  Within minutes, the tiny needle seemed even smaller.  When I opened my eyes, my hands were steady.  Nurse Yvonne rejoined me, and in one quick motion, I did it, overcoming a fear I had held for almost 37 years.

For me, every Monday’s injection is a reminder of my inner strength.  Unlike my sister, I never aspire to a medical career, but needlephobia is definitely in my past.  Sometimes the smallest things can make us feel the most powerful.  Of course, a little Broadway inspiration never hurts. 🙂

RA and the “Red Car Syndrome”

I’m generally amazed at the phenomenon known informally as “red car syndrome”.  The concept goes that you buy a new car, and suddenly, you start seeing that same car everywhere you go.  The others were always on the road, but they didn’t have specific meaning to you, so you didn’t notice them before.  Because we have so many messages coming at us every second, we must filter based on what’s important to us, and we do it in every aspect of our lives.

In business, sales/marketing professionals like me spend lots of time working to reach prospects with “active pain” – in other words, when the prospect has full awareness of a problem for which we have a potential solution.  This gives us the best chance of getting past the prospect’s filter and getting a response.

For the last year, RA has been my “red car”.  Sure, it’s not as glamorous as the shiny Corvette my son wants in 10 years :), but now that I am painfully aware (literally) of the disease, I see information about it everywhere.  Until I started having suspicious symptoms in late 2009, I had no idea what RA really was, and I missed the signals in my everyday life.  These days, I see RA references peppered throughout my regular activities:

  • I’ve subscribed to Cooking Light for 10 years, but never noticed the monthly Enbrel ads, which I now review regularly.
  • I’m hugely addicted to Law & Order: SVU, and no, I’m not ashamed to admit it.  When I work from home, I often have it on in the background to keep me company.  Almost every episode contains an ad for one of the biologic treatments, usually Enbrel or Simponi.  Of course, these ads now get my full attention.
  • Last night, I was playing the CSI: Deadly Intent Xbox 360 game (notice a theme in my interests?), and had to research a pill found at the crime scene.  When I looked it up in the medical database, I was shocked to see that it was Methotrexate.   The game explained that it is a drug commonly used in treating certain cancers and autoimmune diseases, and that it’s available in pill and injectable form.  Of course, I knew that, because I’ve been injecting myself with it every Monday evening since March 2010.

I’m not self-centered enough to believe that these messages have just started appearing since I was diagnosed, but wow.  I went from blissfully unaware of the red car to being run over by it daily.  It’s truly shocking to realize how much information is available to us, once we have the capacity to see it.