Being First Is Not Always a Good Thing

You haven't heard from me in awhile, and I'll tell you that this isn't an easy post to write.

Our experiment with Enbrel has failed. Miserably.

There will be people who Google "Enbrel" and will be led to this blog, so I want to quickly say that I understand that this drug has been a godsend for many patients who have conditions that Enbrel is meant to treat. My use was "off-label", and we had no prior use of this drug for Erdheim Chester Disease to use as a reference. And maybe it might even help others with ECD, but it just wasn't a good match for my particular set of cardiac ailments.

The side effects of the first injection were unpleasant but tolerable. The second shot was another story altogether. I won't bore you with all the details but it's been quite the nightmare. Two weeks later I'm still dealing with a number of issues that weren't present before starting Enbrel.

My doctor wanted me to keep going, to have the next dose administered during a hospital stay of a few days in cardiac ward. And I was told that if I went into cardiac arrest, they could be there right away for me (okay, that statement was a wee bit intimidating just on its own).

I mulled over this option for a few days but my heart continued (and continues!) to act up. Every ounce of me is saying this just isn't right and I've chosen to trust my gut instinct.

Despite some very dear and wise friends gently and lovingly telling me that I shouldn't feel this way, I'm feeling like I've failed. That I'd done something to cause such a violent reaction to the drug, that I hadn't been tough enough or not wanted this to succeed enough. People ask me if I was afraid of injecting myself (no, it really didn't bother me at all).

I have 10 weeks worth of this drug safely stored in my fridge at home and it taunts me everytime open it. I think about how hard everyone worked to get me this drug and how long I waited for that lucky break of a donation. I feel like I've failed my medical team and that I've disappointed them.

Deep down I know I have to do what I think is right. But these feelings of guilt are difficult to shake. I worry that my doctors won't be willing to try other treatments on me. On the other hand I worry that this experiment may have shortened my time. My heart is doing backflips and just doesn't seem to want to fall into a regular pattern. I get two minute breaks whenever the pacemaker kicks in, the rest of the time it's annoying the heck out of me with the pain, weird sensations and strange rhythms.

And sometimes I'm just not sure I have it in me to keep fighting this battle as hard as I have been.

Day Six on Enbrel

I've been meaning to blog for days about my first injection, but just figured there would be more to tell as the days passed.

First of all, it didn't hurt much. That's where Googling can get you into trouble! I'd seen so many other patients write on-line about how painful these shots are, but it wasn't bad at all. Burned for a minute or so and then it was over. And I injected myself, pretty darned easy with the Sureclick injector.

So much happened in a few short hours at the hospital, I won't go into detail except to tell you that the nurse who instructed and supervised me was wonderful (as are all of the team members I met that morning) - and to say that the facilities were something else! Beautifully appointed with real wood panelling, lovely lighting and comfortable furnishings. It felt more a visit to an estate than to a hospital (thanks to a very generous donor who wanted to make the patients going through clinical trials feel more comfortable - and it works!)

My first (almost) week on Enbrel has been up and down. At the end of first day, I was completely without any pain. Something that hasn't happened in a very long time!

Second day was unexpected. I'm usually upbeat and optimistic, and I was a depressed, weepy, glop of girl who couldn't shut up about all things sad and grim. I have no idea where that came from! I'm blaming the drugs, but sure hope that it doesn't happen again.

Third day was the toughest so far. I woke during the night with bad stomach cramps, nausea, fever and wondering why I had done this to myself. I called into the Enbrel hotline around lunchtime (they want to hear about pre-specified side effects, fever being one of them) and they suggested going to a walk-in clinic to see if I'd picked up an infection at the hospital (Enbrel greatly reduces my immunity). I decided to wait it out, and sure enough by evening I felt a bit better. Even ate a little, but that day sure helped with dropping off a bit of the steroid weight!

Since then it's been easier, but I can't say that my ECD symptoms have eased at all. The bone and chest pain returned after that wonderful first day, but I do realize it can take a few weeks for any benefit of the drug to make itself known. I don't think that I've been having any side effects from the drugs since Saturday except maybe being a wee bit sleepier than my already frequently napping self!

I'm so used to taking an assortment of pills daily that it feels a little odd to be waiting for my next injection on Thursday. Every night I dream that I've gone to the fridge for the next dose of my liquid gold, and awaken quite relieved that I've not jumped the gun accidentally!