What’s next

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It was a beautiful day here today and I treated myself to an hour long walk through the park and my neighborhood.

I have to bribe myself to walk lately- I think a summer of laying on my rear thanks to a flare has killed my motivation.  A couple weeks ago I figured out how to stream Pandora radio on my phone (my Ipod is MIA).  So I type in ‘old school rap’ and walk through the neighborhood repressing my urge to start dancing and feeling like a badass.  A badass who limps.

Can I please call that my pimp gimp?

Anyways, I was almost home this afternoon and a good song came on which necessitated an extra lap around the block.  Because, you know, it’s just not as much fun to listen to a good song sitting still!  In the course of that extra block, my left knee and left foot decided to mutiny.

I still haven’t been able to figure out how I can go from just fine to noticeably swollen in a matter of minutes.  It’s cruel.  It’s also evidence to me that I’m still having a lot of disease activity…

I have my last drug study appointment tomorrow.  I will find out what medication I’ve been on although I already am convinced that I’m on the placebo.  Why, you ask?  Because it hasn’t done a damn thing for me.  I feel like I’ve felt before- on the receding end of a really bad flare.  I remember how I felt the first time I took Humira and while I don’t expect to feel such a difference everytime, I would expect to feel improvement.  And I haven’t.  So…the drug study wasn’t beneficial but it also wasn’t harmful.

So what’s next?  My doctor wants to look at infusions. Specifically Remicade.  I want to try Enbrel first for a couple of reasons.  It would be so much easier for me to inject myself once a week than to go for a periodic three hour infusion.  Infusion therapy also really scares me.  I don’t want to try it until I’ve exhausted all easier resources.  I realize that sounds silly.

I’m a little frustrated.  From a lab-work perspective, my doctor says “you look great.”  I’m still seronegative which baffles me but my doctor doesn’t seem to think that is significant.  My CRP has dropped.  On paper, everything is better.  But physically, I’m still not where I was months ago.  My feet and knees are still bothering me.  My shoulder is too.  Remember that hellishly awful joint aspiration awhile back?  That ended up being a bust. Finger= just as swollen as it was before.  The fatigue is better but the nausea can still be a tad bit on the ridiculous side.  I’ve always had a sensitive stomach but it’s getting to be a running joke with my friends.  And if a certain coworker makes one more pregnancy/morning sickness joke, I may need help hiding a body.

Stay tuned- I will be sure to let you know if (when) I’m right about the drug I’ve been receiving and what the plans moving forward will be.

13 responses »

  1. Pimp gimp. Awesome. Love it.

    Sorry to hear there hasn’t been improvement with the drug study. Can’t wait to hear the reveal. And nausea–ugh–how awful. So sorry. : (

    I also look great on paper. I’m seronegative. I have bone loss, sausage toes and ankles, etc., but my blood work is great–CRP is zero. My naturopath is like WTF?! Isn’t it crazy that we can have all this pain and swelling and nothing blips on the radar. WarmSocks mentioned on someone else’s blog that it’s because they just haven’t come up with the right tests.

    • Its maddening! I can totally see how it takes so long for some to get diagnosed. And it makes me feel a little crazy at times too!

      I want to hear about your experiences with a naturopath! I’ve been looking and considering that too. Would you recommend it?

      • I would definitely recommend it–if you can find a good one that is. I love my naturopath. Discovered him on satellite radio. He is also a dietician and a pharmacist. I have never met him in person and all of our consults are over the phone. But he has treated me with such compassion and tenderness–unlike most doctors! He looks at my labs, sends me research info. and listens carefully to my symptoms. I feel strongly about the direction he has taken me because he takes a very basic approach and recommends things to support the immune system and boost energy. Despite my body falling apart the past couple years, I have truly never felt better. He has seen dramatic results with some RA patients. I am the one gal whose body won’t budge. Yay! But I have honestly never felt healthier. Hope this helps.

  2. sorry the RA is still pants. A good rheumatologist looks at the bloods AND looks at you too.
    I did well on Enbrel. got nearly 3 good yrs out of it. there are risks as you know, but no drugs is also a risk. Much love- when will you know about the next drug option?

  3. love the pimp gimp. I know what you mean about how one minute, all is ok, then the next minute, RA explosion. I am lucky in that I haven’t had one that dramatic in awhile, but it freaks me out that our bodies can do that.

    For your sake, I hope you’ve been on the placebo since it doesn’t seem like it’s done much for you. Enbrel has worked like a charm (knock on wood) for me for almost three years….and hoping it’ll keep on for another few! I’m not sure how I’d feel about infusions. On the one hand, would be easier to take off and travel without having to worry about keeping shots cold, but on the hand, well, you are getting infusion therapy.

    Good luck!

  4. Wow, Amanda, you’re really going through it. Stupid placebo! IF you indeed are getting the placebo, you’d think there would be an offer of you getting the real meds at the end of the study. I know I don’t say this to you nearly enough, but I am fascinated and amazed everytime I read your blog (daily on Mondays).

    You are one strong, resilient woman. You are brave, you are unique, you are fantastic. Keep turning up the old school rap and pimp gimping. At the end of the day, flares and all, you still dance better than I.

    Always wishing you the best and hoping for your continued treatment,

    Me.

  5. The swift onset of pain and swelling in RA has always baffled me, too, amandajohn. How can a joint go from being just fine (okay, a little sore) to excruciating in a matter of minutes? What triggers it? Is there anything we might be able to do in those first, dismaying “ramp-up” minutes that might somehow calm things back down?

    I dunno. But I feel your pain and your frustration.

    I hope your doc will let you try Enbrel rather than Remicade this time ’round, as you’d prefer. What is it about infusions that scare you, though? I can understand the convenience aspect, but personally, I think I might enjoy taking three enforced hours off to read or nap or watch a movie on my laptop while hooked up…

    Sending warmth, comfort, laughter and hugs your way. Feel better!

  6. Pimp gimp is awesome.

    I, too, am confused by how good I can look on paper when I’m actually feeling like garbage. It’s somewhat reassuring, though, to hear that your rheumatologist doesn’t seem phased by it – I sometimes doubt myself when my bloodwork looks great, so I’m always grateful to hear others acknowledge we really can still be feeling terrible.

  7. I am also a part of the seronegative club! My tag line should be: stumping doctors since 1993! I can’t get the picture of your pimp walk out of my head. Please consider posting a video of you busting a move to some old school rap. I would LOVE to see you rock the roger rabbit! Let us know how your infusions go!

  8. I know what you mean about the motivation. I have had a rough time finding a med that works for me (after Enbrel quit working), finally feeling better on Humira but having a hard time going to the gym. I feel good after a workout, but next time I have to make myself go. A badass with a limp, what a visual! I have Rob Zombie, Metallica, Soundgarden etc on my iPod to keep me moving.

    Enbrel worked well for me for nearly 6 years before it quit. I know people who have used it for longer. I liked Enbrel, didn’t hurt like Humira does to inject. After Enbrel, I did Orencia infusions for 10 months, it never did work well for me. Hope you find something soon to give you some relief.

  9. Sorry you’re having such a rough go :( I am seronegative as well, Humira worked amazingly for about 6 mths then stopped…. and I was ready to start Remicade. Desperate to avoid it, I tried my elimination diet and I’m now over 2.5 mths feeling better than I have in 4 yrs. Maybe you’d consider giving it a try?? I am almost off all my meds. I know it sounds CRAZY…. Anyway, keep your chin up girl!!

  10. Hope you get something that works soon.

    Totally with you (and everyone else!) on the strange, sudden development of swelling/pain. Why?? Why at that moment, why in that particular joint and why does it just go as suddenly as it appears? I think if there was a sound medical explaination for that part of RA, I’d be a lot happier. Just knowing the mechanics of it.
    Feel better!

  11. Love the pimp gimp. I just started Remicade after two years of MTX, Enbrel, and Simponi (still on the MTX, 25mg sub-cu), and the Remicade is the first thing that has made me feel like my self again, even if just for a little bit at a time (also seronegative). I definitely recommend it, because you know so much quicker whether it is helping or not. I spent 6 months on Enbrel before my rheumatologist concluded it wasn’t doing anything. Lots of time wasted. And I agree with Wren, sitting still for 3 hours is a nice change of pace. Hope you feel better soon.

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