Decisions, decisions


I’m so tired of having to make them.

10 years ago, the weightiest decision I had to make was which party I was going to go to.  I mean, seriously people, that was a MAJOR conundrum.  The guys at the Farm were always way hotter but the guys at the House of Big Decks always had free beer…what a quandry!

If you’d told me then that at age 31, I’d be on a medication that’s a low dose of chemo, another one that’s really bad for because it can kill bones and other things, and deciding between two different treatments that are both 8K-10K per year…I would’ve smiled at you, turned away, rolled my eyes as far back in my head as possible, called you crazy and went back to my beer.

What a difference ten years makes!

At my follow-up with my rheumy on Thursday, they approached me about another study.  Yes, I’m supposed to start Orencia last week. Actually, I was supposed to start it beginning of December. But who’s keeping track! I had it scheduled and everything.  But the insurance verification trolls made me delay it yet again.  SO FRUSTRATING.

Anyways, it’s a Phase 3 study by Eli Lilly for a yet unnamed drug that’s showing a lot of promise.  For the first six months, you get either one of two different dosages OR the placebo.  After the first six months, everyone gets the drug for five years. It’s self injectable every two weeks and would require me to stop by the doctor’s office once a month to pick up the injections.

In all honesty, my first response was HECK no.  I saw no benefit for me with the first study I did.  I’m certainly not going to stay on Prednisone for five years- you are batsh*t crazy if you think that’s going to happen. BUT, after reading on the new Lilly drug, learning that you can taper off of Prednisone during the study and doing math on how it would help me financially to not have to pay for co-pays, x-rays, labs, or meds for five years as well as five years of not having to fight with that douchewad known as Blue Cross Blue Shield….well, that right there is something to think about.

The fact that it’s less of a time commitment (on paper) than Orencia and the fact that after the first six months, I’m guaranteed to be on the drug…that’s even more to think about.

I’m torn but leaning towards doing it. I think many of us would say that new medications are scary, not from the side effects, but from the ‘what am I going to do if this doesn’t work?’  It took awhile but I had originally married myself to the idea of being on Actemra. Then my doctor wanted to wait on that and try Orencia first.  I was upset about that until I read more about it and finally agreed with him.  So now I’m married to the idea of being on Orencia.  And now that’s maybe going to change too.

It’s just scary. I think my doctor could see it on my face when we were talking about it.  I got quiet (which doesn’t happen often) and he just looked at me and pointed out that all the drugs that have made it to Phase III in the past 10 years have been very successful.

So now I feel like I’m kinda back to square one without a plan.  Also, I feel more than a little bit jerked around by the insurance trolls.

Am I really old enough and smart enough to be making these kinds of decisions???

It really doesn’t feel like it sometimes.

4 responses »

  1. There is no excuse to not have your insurance approval yet. I kinda wonder if someone is sitting on some paperwork somewhere. Somewhere in writing it should say how long it takes for them to go through the process. My old insurance did it in three days, even though I’d been told it could take longer. Now I’m with BCBS and it took them the full two weeks they’re allowed in their contract. You’re talking about months, though. There should be someone in human resources who can give you the name of your company’s liaison with the insurer who can light a fire under somebody to get this done.
    Unless you go with the trial med, in which case there’s no reason to bother the insurer.

    Good luck!

  2. That is a tough decision; I wish I could give you some kind of divine guidance…

    I do fully believe, however, that, if we are at all intelligent (and I do think you are, based at least on your writing skills!), we make the best possible decisions we can at any given point in time with the information we have at hand. So, ergo, whatever you decide to do will be the right thing.

    Does that make it any easier?? Hope so!

    🙂 L

  3. Great point, Laurie!

    Amanda, that’s really tough. But I totally understand why you’d be tempted by the 5 year free meds thing. Plus Orencia’s not been out that long either has it? So it’s not like you’ve got a choice between something as old as, say, Enbrel and something brand new.

    I don’t know, I guess the only thing you can do is find out as much as you can about both and well..take a leap of faith.

    Or flip a coin?
    Good luck, this all really sucks. I wish we could all just go back to the party stress.

  4. Amanda,

    I so get it. I had to make this choice last year, and in the end I got gun-shy and backed out of the trial. Now I hear that its not that far from being approved, so it must have been successful, but I’m also glad that I did wait, because in the meantime, I’ve crossed two drugs off the “list,” and the trial drug will be approved soon anyway. Its the one that is in pill form.

    I’m not much older than you, and I’m probably even less mature. I just married an old soul, so that saves me! 😉 It is hard at times…I too long for the day that my biggest worry was if I had time to change my bag to match my outfit before work. I’ve since added a disease AND a baby, so try that! LOL.

    I do agree with Laurie. Whenever I start to obsess on past decisions, RA related or not, sometimes I’m sure that I did something wrong that led to much regret…BUT, then my hubby points out that we always did what was best with what we had and what we knew at the time, and he’s right. Hindsight is 20/20, but if you make a decision after you’ve read about it and thought it over…that’s really all anyone can ask of us.

    Good luck! I’ll ask a favor of your fairy Godmother (not to mention God – lol) to help you out!!!

    Love ya,
    RA SB

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