Long Overdue RA Update

WOW! It has been a very long time since I have posted anything to this blog. Long story short, I was beat down…and not only by my health. You know that saying, ‘No good deed goes unpunished.”. Yeah, well, I was living it. But that’s a story for another time…

According to some unfinished blog drafts, I started seeing a Rheumatologist sometime in late June or early July (2011). In September 2011, he sent me in to qualify for a new RA drug study (a JAK inhibitor). I flunked apparently and did not get to participate in that study.

From there, he started me on Methotrexate (a low dose of the chemo drug is used to treat RA). I had been on MTX for only 2 weeks when I went in for a 3-month blood draw for my Primary Care doctor. She was rechecking my sugar & cholesterol which had been elevated since the prior year. My PCP was thrilled to see my sugar and cholesterol were beautiful….and then she turned the page to discover that my ALT (liver enzymes) had nearly quadrupled. She felt a little better upon hearing that I was now taking MTX, but wondered if my ALT would stabilize or continue to get worse. That I would discuss the following week when I returned to the Rheumatologist.

The rheumatologist strikes me odd every time. He displays little emotion…make that no emotion. Just when I think he’s going to leave me on MTX, he says, “Well, it’s clearly not working for you, so we’ll try something else. We have many other options.” So, he writes me an Rx for Arava.

I follow up with more bloodwork about 6 weeks later. My ALT has returned to a normal level. During the visit, he asks me a funny question, “Are you still dropping things?” I gave him a puzzled look. He informed me that I had told him I had been dropping things. I find it very odd that I cannot recall #1 dropping things and #2 telling him that I was dropping things. So, I decide that from now on I will, to the best of my non-journaling self, keep better track of what’s going on from day to day…or as something happens.

A particular health app on my Android makes it easy to click the day, make a few notes, or check off some symptoms. It’s not an RA-related app (which I’ve asked my husband to write for me!), but it helps me keep track. Another good indicator of what’s going on with me is my internet search history. When I’m dragging tail and having to take 3-hr naps 4 days a week, I’m likely to Google “WTH???”.

So, for 4.5 months I kept track of how I felt. I found that every joint in my body…joints I didn’t know existed…ached…relentlessly. Excruciating heel pain (it feels like my heel bones are poking through my feet) that I had experienced in August while away in IN, was plaguing me 24/7. I was fatigued…taking those 3-hr naps I mentioned almost every afternoon. Driving was become a concern for me as I struggled to stay awake on any drive outside of town. I was accomplishing nothing on my daily to-do list and forgetting…and forgetting…and forgetting. I forgot to pay our storage rental every month and twice they locked me out. I even forgot to go to a meeting that I had scheduled. I was starting to feel depression creep in because I felt lost within myself. These were not normal things for me. And it bothered me… a lot.

At my April 5th appointment, I presented a page long list of the issues I had been tracking, along with several questions he had yet to answer or I had forgotten ask previously. He read them over…or appeared to. Oh…and I pointed out this weird moving object under my skin on my right knee. He felt both of my knees through my jeans and declared, “That’s just normal knee parts.” I reiterated that this “nodule”, I guessed…MOVED…around….freely. I could slide it around with my finger. He dismissed it. Grrrr.

Back to my 4.5 month of notes. He glanced it over and remarked, “Your complaints look more like Fibromyalgia than RA.” He paused to look at my file and said, “…But you have a positive RA factor, so you definitely have RA. (pause) But you can have both.”

Now, he moves to switch me from Arava to a different RA drug…an injectable. He mutters things about not knowing which injectable my insurance approves. According to him they each have their own drug they start with….but then he decides to just write an Rx for Humira because he “thinks” that’s what Cigna will approve.

I am so dumbfounded by his final remarks that I completely forget about the unanswered questions on my list. He tells me to continue taking Arava for 1 month WHILE I take Humira. BECAUSE…he wants me to see just how good I felt while taking the Arava.

Excuse me???

I’m suffering from a real disease and he treats me like I’m a freaking hypochondriac just because he hasn’t found the magic bullet potion that will work for me…and they’re may not be one from what I see of some RA patients. But don’t tell my PCP because she tells me that only the few people who have a bad experience with a medication post online. The other 95% are too busy living and enjoying their lives to post about their meds online.

What is completely fascinating is that I had stopped taking Arava about 4-5 days prior to my 4.5.12 appointment. I didn’t refill my prescription because I suspected he would switch me…again. I have been off Arava approx. 29 days…and I’m feeling better. Fewer joint aches. A lot less fatigue (I have only taken 3 naps in this whole time). My mind is clear. I can remember the things I need to do…and follow through on them. I’m actually getting things done that have been piling up for 5 months.

I left that appointment 3.5 weeks ago disgusted…and done with that rheum. Finding a doctor one can trust is really an exhausting job in Florida. So, I’m on the hunt. Not sure where to go…how far I am willing to drive…etc. I am even considering going out of state. I’ve got a couple prospects, but I want to proceed a little differently this time.

Right now, I’m feeling better than I have in MONTHS! I still have joint aches…I still have RA, but I’m not ready give up what I’ve gained…mentally and physically…just yet for the unknown side-effects of a new drug. I’m taking names, making lists, keeping track, and praying…and praying…and praying. One thing I have come to realize lately is that God has a plan in this…and I’m content in that.

Anne-Marie

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One thought on “Long Overdue RA Update

  1. Anne-Marie,
    Oh how I can relate with your posts. Somehow (more like Divine intervention) stumbled upon your blog & read Shipwrecked. You had me hooked, I felt like most of what you wrote could have come straight from my own journal, so I continued to read & learn about your health issues with RA. While I do not have RA, once again I could relate with so much of what you said. The Lord has brought something to my attention & if He leads You to I pray you would take the time to watch a short video and see if this might be an answer to prayer for you as well. In His great grace – Paulette

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