February 2009: The First Signs of Trouble
I was in the best shape of my life. I spent almost 18 months losing 25 pounds. I completed my first half-marathon in January 2009 at “The Happiest Place on Earth”. 🙂 Sure, it was walking, but at a fast clip the whole 13.1 miles, I finished (with Lora and our friend Elizabeth) in just over 3 hours. I was even working out with a personal trainer, monitoring my body fat, and wearing, no kidding, a size FOUR!
I was determined to take the next step and start running. But every time I’d try, I couldn’t seem to manage my breathing. I could walk at a 4.2-4.4 MPH pace, but within 3-5 minutes of picking it up to a jog, I had a hard time catching my breath. If I didn’t slow down, I’d start seeing spots and getting dizzy.
The same phenomenon occurred when I did a high intensity workout with my trainer, Amber. One afternoon, she and I started boxing. I decided that what I was feeling might be something I needed to “push through”, so when I saw spots, I didn’t stop. Not smart, I know! I ended up on the mat, passed out. Luckily, I came back quickly, and was okay, but my heart was racing uncontrollably. After that, even the slightest movement sent my heart out of control. One day, my mom called while I was making the bed, and I was so out of breath I couldn’t speak to her.
By this point, I had taken to wearing a heart rate monitor on my wrist at all times. I woke up one morning to find my heart rate at 132, and my chest in severe pain. I called my parents, and they drove down to take me to the hospital. I was whisked into triage and given an EKG, to ensure I was not having a heart attack at that moment. Thankfully, I was not.
I was an enigma to the doctors, so they admitted me. They connected me to many machines and stuck me with numerous needles, trying to figure out why my heart rate wouldn’t slow. Still, it stayed above 120. They did MRIs, CAT scans, x-rays, lung function tests, stress tests, and even a heart catheterization to make sure everything was functional. It was, and yet, my heart rate was elevated. Five days later, they released me, with my first maintenance drug (a beta blocker), but no real answers. My diagnosis, inappropriate sinus tachycardia, is one of exclusion, meaning it’s given when other causes of tachycardia are ruled out.
It was the first of many health adventures I would experience. I didn’t understand the foreshadowing then.
Oct-Dec 2009: Am I Just Getting Old?
My life was finally moving in the right direction. I was still taking good care of myself physically, and starting to find some emotional balance following the end of a bad marriage. On my beta blocker, my heart was behaving, so I decided to try running again. Being the goal-oriented woman I am, I signed up for another half-marathon, determined to run at least 5 miles of it.
About 6 weeks before the race, I started to notice extra pain in my joints, especially my ankles and my hands/wrists. I chalked it up to my workouts, though I also knew in the back of my head that I wasn’t training as hard as I wanted. It seemed to get worse.
I made it through the half-marathon. I ran some of it, but the joint pain had kept me from training as hard as I wanted the last few weeks. During the race, my joints swelled terribly. Not around mile 7-8, like usual, but starting around mile 2. By the end of the race, my hands and arms felt like stone, and I felt like I was walking on shards of glass. However, I still finished in 2:50, so I was very pleased.
Also, after wearing contact lenses for 23 years, I was told in November that I would never wear them again. I was battling chronic dry eye, which had caused severe corneal abrasions and severe nerve inflammation. I was put on a Restasis regimen, which continues to this day. I was also given three-month collagen plugs to stimulate moisture in my tear ducts, a procedure I have repeated twice more in the last 3 years.
Two weeks later, just before Christmas, my entire body hurt too much to get out of bed. Between my heart issues, my joints, my eyes, and other seemingly unrelated problems, something was up. There was no denying it, so I went to see my doctor. He immediately discussed auto-immune problems with me. He wrote me a prescription for Celebrex, to help with the joint pain, and got me a referral to a rheumatologist.
Merry Christmas to me.
January 2010: Diagnosis
At the beginning of 2010, I met a doctor that would become very important in my life, my rheumatologist. My symptoms came on strong in 2009, and in that way, I was lucky. Many people have mild-to-moderate symptoms of auto-immune disease for years before they are diagnosed, but I did not.
My doctor listened, examined me thoroughly, and completed blood work and x-rays immediately. Even before she had the results, she predicted the outcome. Rheumatoid Arthritis. I remember the first time she said it. I thought what everyone thinks. Arthritis is for old people! As I learned from her, and from my research and the amazing auto-immune arthritis community, that is NOT the case. Of course, my body told me that every day.
The plan has always been to fight the disease aggressively. It’s a trial-and-error process to find the right combination of therapies that will work for each patient, but finding this combination is important. For those of us with this disease, our immune system is actively eating away at our joints every day, and will leave us deformed and/or disabled if we don’t fight it.
For immediate relief, I was put on steroids. Medrol, to be exact. I’ve stayed on it for almost 3 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. J 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.
In the mean time, I started researching like crazy, and trying to come to terms with this idea of chronic illness. I kept working (and debating with myself about whether I should “tell” anyone what I had), and trying to battle through my pain, stiffness, and fatigue.
I had entered the strange, new world of chronic, auto-immune illness.
March 2010: Injection Time!
Unfortunately, my initial drug combination did not work, so in March, my doctor introduced heavier artillery: 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.
Oh yeah, injections. I wrote about this in my “Defying Gravity” post. Another new experience RA gave me, but one that I could have done without. 🙂 Thankfully, I got pretty good at it over time, and a lot less scared. It’s a good thing too, as there were to be many more needles in my future.
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?
Six months in, we realized that methotrexate alone was not effective. So, 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.
I also bought my first walking device, a snazzy folding cane. Every July, I attend a major conference for work, which means 14-16 days on the go. So, I figured I might need it. Of course, I hoped not, which is why I bought a cane that I could hide away in my briefcase. The verdict? The cane came out on Day 3.
Nov 2010: Narcotics
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. I had always been afraid of narcotics, avoiding them after surgery even when prescribed. And Vicodin didn’t help much, so I rarely used it.
January 2011: I’m a Blogger!
It was very important to me to raise awareness. In May 2010, I gathered a group of friends and family for the Tampa Arthritis Walk, and we raised almost $3000 for the Arthritis Foundation, which was great. But I wanted to do more. I had always thought about blogging, so in January 2011, I launched rudeawakenings.org, which the goal of raising awareness about RA and chronic illness. In my own little corner of the Web, we’ve had some good conversations, and it’s helped me so much more than I can express.
March 2011: Allergies
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. I don’t know if I have celiac disease, but because I would have to eat gluten for 6-8 weeks before having the test, I won’t be finding out anytime soon. We’ve been having fun discovering new grains, and developing alternative recipes for our favorite breads and desserts that are gluten-free. Lora made a gluten-free pumpkin cheesecake for me this past Thanksgiving that ranks in my favorite all time desserts!
July 2011: My New Ride
After renting wheelchairs on a few different occasions, we finally broke down and bought me one. Wow. Weird. And sooooo nice to have. Now, even when I’m not sure I can move, I can participate in lunch out with family or friends. I can enjoy a theme park on a marginal day. UPDATE: I now own a rollator too, which is the envy of the senior citizens in my neighborhood.
Still, I never thought that I’d be buying a wheelchair the same month I turned 38.
September 2011: A New Infusion
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.
A little about narcotics. Percocet does help with my pain, and as such, I take 3 doses every day. Without it, I would not function. However, it works for me like ibuprofen works for someone with average pain. I do not get “high” from it. It just dulls my pain, from an 8-10 when it wears off to a 5-7, which I can manage. I would love to not need it, but while my pain levels remain this high every day, I appreciate the relief. There have been numerous studies indicating that, for people in severe pain, the risk of narcotic addiction is low, and that has been my experience.
Oct-Dec 2011: Ch-Ch-Changes
Even with these medication changes, my health continued to worsen.
In October, I started an exciting new role at my company. Lora and I got engaged! In November, she moved in with Bear and me. My personal and professional lives were in a great place. We hosted Thanksgiving weekend for both sets of parents, my aunt and her boyfriend, and my brother and sister-in-law. By the middle of it, I was wrecked, and I never fully recovered.
In December, I sat in the most comfortable chair I could find, weeping as I tried to work on a spreadsheet. I had planned to take two weeks off at the holidays, but it became obvious that I needed to start my vacation then. So I did, fully planning to be back in the saddle in January.
I am very lucky to work for a great company, and to have had an amazing manager at that time, since things don’t always go as planned, especially with this disease.
January 2012: New Year, New Surprises!
Biologic drugs weaken the immune system overall, and its ability to fight infection. Just after the holidays, when I expected to be heading back to work, I instead spent time in the hospital. I was in septic shock from a deadly combination of a back-to-back common cold and stomach flu that had infected my bloodstream. 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. When it was all happening, I didn’t realize exactly how serious it was. Lora did though, as she was asked multiple times about my “durable power of attorney”. Scary stuff.
Unable to move, unable to get out of bed for weeks, I was forced to go on indefinite 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, and formally diagnosed my fibromyalgia as “severe”.
June 2012: My Body Rebels, Part 1
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, which they suspected was the culprit. I also added more monthly blood work to check for improvement.
The support I received from my manager and my company was wonderful, as I remained on disability. However, I was not approved for an extension to my paid short-term disability, as the claims examiner determined that my symptoms were “exaggerated”.
July 2012: My Body Rebels, Part 2
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 of course, hearing that it was behaving abnormally was worrisome. I mean, I only have one. 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.
August 2012: Seeing the Damage
Spurred on by the disability denial, my doctor took the time to detail a letter to the insurance company regarding my condition: what treatments we had tried, which I had failed, how my disease had progressed since she started seeing me in January 2010, and how my disease fit the American College of Rheumatology criteria for uncontrolled Rheumatoid Arthritis.
In addition, she performed a Doppler ultrasound exam on my hands and feet, taking pictures and documenting bone erosions and active synovitis in many of those joints. I didn’t anticipate how hard it would be for me to see the joint damage on the screen.
Despite this evidence, the insurance company refused to alter their decision. It’s further proof that “invisible illnesses” are difficult for others to understand, and often do not receive the level of support that they should.
I will keep fighting for my benefits, and for awareness of the seriousness of these illnesses.
September 2012: Doubling Down
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 Wedding! (Plus The Itchy and Scratchy Sideshow)
Well, the Humira excitement didn’t last long. The morning after my second weekly 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.
There was other excitement though…Lora and I got married! We made a stop at Sephora for some body makeup to cover the hives on my arms, and enjoyed an absolutely perfect wedding weekend in NYC with friends and family! The extra steroids from my Medrol-Pack gave me a boost for the weekend, and though I was swollen and tired every night, things couldn’t have gone better!
Health-wise, 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: I’m A Lab Rat!
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. It took two Medrol-Packs to knock out these hives, and lots of oatmeal baths and anti-itch meds to get through.
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. I will be the first patient in my doctor’s practice to try this drug – just call me “guinea pig”.