The Continuing Adventures of Life with RA (2014 Edition)

Much has changed since I last posted, so here’s a quick attempt to catch you up:

  • Xeljanz is officially out. After a few months of testing, my rheumatologist and I came to the conclusion late last year that it was, in fact, the source of my rapid weight gain, so I had to stop taking it. This was a bittersweet day, as you can imagine. I was happy to finally know the source of the weight gain, but sad to say goodbye to the biologic that was finally working to slow the damage from RA.
  • Rituxan is in. In late December/early January, I had my first set of Rituxan infusions. Mostly, they went fine, and took me back to a manageable disease level from approaching near constant use of my walker and breaking out the wheelchair for longer excursions. I experienced some tachycardia, a wicked headache, and a few other symptoms sporadically for 48 hours after the first infusion. For those of you who have taken Rituxan, or researched it, you know that the 6-8 hour, then 3-4 hour infusion processes are time-consuming. Of course, it’s worth it to get some relief. I’m hoping it’s really working, because after this, I’m officially out of biologic options.
  • I’ve added Eastern medicine to the mix. In February, I started seeing a Doctor of Chinese Medicine/Homeopath/Kineseologist/Acupuncturist. Yes, she has lots of degrees and lots of expertise in Eastern medicine. It’s a whole different approach than what I’ve used before, and I love it. She’s helped me with my continuing digestion problems by finding another food intolerance, this time to dairy. She’s helped me work through the chronic fatigue, both resulting from my autoimmune issues and from the side effects of my Western medicines. I have acupuncture sessions every other week, and even while I continue to struggle with RA, I notice my general physical and mental health improving. I am even losing some of the Xeljanz weight, despite my continued use of Medrol.
  • My RA is more active than ever. Despite the positive effects of Rituxan and my progress with Eastern medicine, my disease is extremely active. My most recent blood work
    Waiting for Rituxan....3 weeks to go!

    Waiting for Rituxan….3 weeks to go!

    showed high CRP and SED rates, even 2.5 months after Rituxan. Of course, I don’t need blood work to tell me that my disease is active. My joints tell me every day when I can barely move them. My body tells me every day when it begs to go back to bed. So, I wait. Generally, Rituxan infusions occur every 4-6 months. My next one is scheduled 3 weeks from now (5 months after my first). Tick tock, tick tock.

I feel grateful that, over the past few months, I’ve learned much more about my body through my experiences with Eastern medicine. Now that I have so many of my tertiary issues under control (food intolerances, digestion, even some of the fatigue unrelated to RA), I feel hopeful that I’ll see the full effects of Rituxan when I get my next set of infusions in a few weeks. Spring is a new season; a time of rebirth following the long winter. After almost 5 years with this disease, I’m ready for mine.

Wishing you a spring full of new discoveries and a rebirth of your own…

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Ups and Downs

Xeljanz. It’s been working well on my RA symptoms for the last few months.  During that time, I’ve been squeezing as much life out of every day as I can. Quite frankly, I had forgotten how to balance that kind of “busy-ness”. I definitely overdo it some days, and I pay the price for that, but after the last few years, it feels good to have the energy to even make that choice. If you know me, you know I’ll err on the side of “too much” vs. “too little” whenever I have the chance. For the most part, it’s very much been an “up” time.

So, I didn’t notice at first when my weight started creeping up.  Until my clothes no longer fit.  Until, for the first time in my life (not counting when I was pregnant with my son), I was gaining in my stomach. Usually, my hips, bootie, and thighs are my problem areas.  It was weird.  And it didn’t stop. It hasn’t stopped.  It keeps getting worse. I have also developed horrible GI symptoms (I’ll spare you the details :)), worsening fatigue, and some other odd symptoms unlike those I usually feel with RA.

Like most health issues we spoonies experience, it’s not simple.  I’ve seen an endocrinologist.  She diagnosed me with probable Hashimoto’s Thyroiditis, though my numbers are still barely in the normal range.  I’m on a low dose of Synthroid, which has already helped my fatigue. I’ll go back regularly for blood work (because we all need more of that, right?), and she’s looking at other causes for my new symptoms.  It’s just hard to know if something is amiss in my endocrine system, because I take Medrol every day. So, she’s making educated guesses. Comforting.

In the mean time, the lack of definitive answers combined with my continuing symptoms have earned me another specialist. That’s right…I now have a gastroenterologist! Pretty soon, I’ll have collected the whole set of doctors. I wonder what the prize is when I do! 🙂 He’s also running tests; blood work, of course, and next week, my very first colonoscopy. I’ll write about that lovely experience after, and we’ll see if I get some answers.

My rheumatologist did find a trend in my weight gain though, and it goes back to Xeljanz.  Though it’s not listed in the literature as a side effect, she noted that my weight gain started, very slowly, the month after I went on the drug.  Over the first 3.5 months, I gained 8-10 pounds,  Then, my weight took off like a rocket. I’ve been gaining 5-7 pounds every month for the last four. Since it was the only change in my medication during this time, it seems likely that the RA drug that’s helping me may be causing a very serious side effect. Guess how we find out? I’m off Xeljanz for 45 days, to see what happens to my weight.  If it stabilizes, or starts to come down, I will not be allowed to take Xeljanz again. It was the last biologic available to me — the only one I hadn’t tried — so according to my rheumy, my next option is clinical trials.

Today, I used a cane for the first time in 2013.  My pain levels are so high that I have insomnia (“painsomnia”, a fellow spoonie called it once. I love that!). I’m not sure what the future holds in terms of my mobility. What goes up must come down, I guess.

I tell this story for two reasons.  First, I promised many of you updates on my progress with Xeljanz.  Things have been mostly going well, or so I thought, until this setback. The final jury on my experience is still out though, and I’m not giving up hope. Neither should you. Second, this blog is about awareness.  These diseases are complex, and most of us work with teams of specialists to proactively manage our health.  It’s like another job, in many ways.  Spoonies are superheroes, beating the odds to live their fullest lives every day.  Especially during Invisible Awareness Week, I wanted to recognize this wonderful community.  Here’s to more ups than downs for all of you in the coming weeks and months!

It’s Been Awhile…

So sorry about that.  But guess what?  I haven’t been blogging because my life turned upside down, in a good way. Cue the drumroll………….Xeljanz is working!!! It’s been almost 6 months since I starting taking this brand spanking new biologic, and in the 3.5 years since my diagnosis, nothing has worked better!  Here’s where I am now:

1) Back to work! I was on disability for a year, and now I’m back to full-time. Of course, I’m blessed to have a job I love, to work for a flexible company, to have the support of a great manager and team, and to work from home most days. So, I’m lucky. And I work my tail off. Which is good, because Medrol has given me lots of excess tail. All the more reason to focus on #3. 😉

2) On fewer drugs. Unplanned side effects and allergic reactions forced me to pare down my med list, and now, I’ve been able to go further.  On a daily basis, I take 4 drugs for RA, 2 for fibromyalgia, 1 for Sjogren’s, 2 for medication side effects, and 1 pain medication.  And my doses of Medrol and Percocet are both half or less of what they were 6-8 months ago.  The synovitis in my knees and ankles is significant, so I’m not going to drop further, but I’ll take 8mg/day from 32mg/day.  Oh yeah!

One of our many adventures!

One of our many adventures!

3) Exercising! This is HUGE for me. My joints swell during and after, and sometimes it’s hard to motivate, but wow, it feels good. In 2013, I’ve been hiking, biking, walking, swimming, and canoeing.  A few years ago, I promised myself that when I turned 40, I would finish a triathlon.  Not too long ago, I thought I might not make that goal, since I turn 40 this year.  But I just signed up for a sprint tri in late September (my amazing wife and partner in all things is doing the duathlon that day, so we’ll be training together!), and I can’t wait! I’ll walk the entire 5K to finish if I have to…I know I can do this!

4) Fewer doc appointments. I am blessed to have lots of great doctors.  But, it’s strange to be a 30 something with such a big team, and I definitely don’t love that I have to see most of them every 1-3 months.  In the last 2 months, my opthamologist and hematologist dropped me from every 3 to every 6 months, my pain management specialist dropped me from every three months to annually (whoa!), and last week, I had my biggest success.  My rheumatologist, who I’ve been seeing monthly since January 2010, just changed my appointment schedule to every other month. In June, I have exactly ZERO doctor appointments scheduled (assuming I don’t get sick…excuse me while I run and knock on some wood!).

5) Just feeling better! I still have up and down days, of course, but my better days outnumber my worse ones lately.  Fatigue, which has been my worst symptom, has improved noticeably (though it’s still more debilitating than pain…seems harder to just “tough out”). I’m still the “tin woman” every morning, but often for only 1.5 hours these days.  My morning stiffness used to last for double that every morning. The livedo reticularis on my arms and legs is much better, meaning my blood vessels are less inflamed.  I’m still anemic, but my hemoglobin and hematocrit levels have stabilized somewhat.

So, lots of good news, which really means that I’ve been adjusting to a more active life including work and lots more out-and-about fun with Lora and Bear. 🙂 But, I promise to get back here more often.  I’m well aware that things can change in an instant, but I’m savoring every moment, and hoping 2013 has been a year of good news for all of you as well! Drop me a note and let me know how things are, whether you’re taking Xeljanz, another biologic, supporting someone who is, or just stopping by to say ‘hi’.  Thanks so much for your support…I’ve missed you!

I’m Officially A Guinea Pig!

If you read my last post, you know that over the last 2.5 years, I’ve failed a number of different biologics.  TNF blockers were my last option, and as it turns out, I’m allergic to them.  So, it was looking like I was going to go back to Orencia, which was the best of the worst.

All that changed on November 7th when a new biologic (and the first ever available in pill form) was approved by the FDA.  It’s called Xeljanz.  As of yesterday, my insurance company approved me, so I will be the first patient in my doctor’s practice to start this new treatment.

I’ll admit that I’m more than a little apprehensive about starting a drug that’s brand new to the U.S. market.  However, I’m excited about the prospect of having something new to try, just when it seemed I was out of options – and would be forced to live with the joint damage I’m currently experiencing.

My pills should be here tomorrow, and I’ll be reporting on what happens and how it works as I go.  Wish me luck in the lab!