I just drove home with over $1,700 worth of drugs in my car – it's a good thing the cops didn't pull me over.
Just kidding!
The drugs? My first four SureClick injections of Enbrel. That's it: four weeks' supply. I could have gotten more, but charging that much was enough, and if the power goes out (they have to be refrigerated), I don't want to be responsible for having more on hand.
Along with the drugs, I got three Toblerone bars to feed my emotional need for comfort at the moment. I had a day filled with some crap moments. My three little toes (hey! one Toblerone bar for each!) on my left foot were hurting this morning, then kicked up a fuss again this afternoon to such an extent that I had to pull off my boot at work and ice them. (And what is it with those little toes – now the right foot is hurting. It's not like I dance en pointe or anything.)
Then, because of the timing of everything, I'm not sure Enbrel's Enliven support services will be able to get a nurse here tomorrow night to oversee my first injection. I'm taking my Methotrexate tomorrow, and I want to do both injections on the same night, so whether someone's here or not, I'm going for it. The other injection was a breeze, so how hard can the SureClick be? After all, it's not like you get to test an EpiPen before you use it.
I started reading forums to see if anyone else had done an injection for the first time on their own and all I read was how horribly painful it was, not how hard it was. I started freaking out, until I found this site that put things in perspective.
So, am I totally naive? Can I do this on my own? I'm pretty confident, and really had absolutely no problem at all with the Methrotrexate injection.
Thoughts?
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Please don't tell me that $1,700 was your part of the co-pay for a month of Enbrel?
ReplyDeleteAs for the rest, since you seemed to have no problem injecting the MTX, I'm betting you won't with the Enbrel, either. Still, there are probably right ways and wrong ways to do it, so if a nurse can give you pointers, why not?
Hope your toes will be feeling better soon. That's just the pits.
-Wren
No, thank god! That's the total cost, and I'll be reimbursed 85% of that. Also, on the injection front, just talked to my cousin, who has psoriasis, and turns out she's been on Enbrel SureClick for 2 years. She gave me some tips. We'll see if the nurse calls tomorrow and can come, but I'll let you know what happens.
ReplyDeleteRe to the toes, they're now feeling better, as am I overall. I can't get over how things change from one minute to the next with this whole thing. Très bizarre!
:) L
Do you want me to come over when you shoot yourself up?! Cuz I totally will. Can't guarantee you won't have to revive me if I faint, but I'm good for moral support and a laugh at the very least!
ReplyDeleteYou'd do that for me, Opal?? Drive all the way into the city? If you're game, I'd love to have you for moral support. I wouldn't even make you watch. You could sit in another room even!!!
ReplyDeleteLurleen
What time will you be home? If a nurse can't make it out, I'd be happy to help. Hell, my dad was given some new medication over the weekend and was hallucinating imaginary people and calling me Doctor! So I'm sort of perfectly qualified to sit in another room while you give yourself an injection!
ReplyDeleteI'll take you up on that, then! And, hey, given the amount of time you've spent in hospitals, you should be a freakin' pro at things!!
ReplyDelete:) L
I think you can definitely do it. Especially if you're already doing methotrexate injections, the SureClick should be nice and simple.
ReplyDeleteEnbrel is so unbelievably expensive. I just realized a year of Enbrel actually costs almost double the law school tuition I'm going to be paying for the next three years, which just seems incredible.
Good luck tomorrow!
I did it, Helen, and it worked! A wee bit of a problem re thinking it hadn't, but all in all, not bad...
ReplyDeleteThe cost is crazy! And then I went back to the pharmacy the next day and spent over $400 on migraine meds.
Good luck re law school – how exciting to be tackling such a challenge.
:) L
Hi Lauri,
ReplyDeletegreat blog! I really enjoy your posts because I also have RA (diagnosed in Jan 2009 with the first attack starting in Nov 2008). I am fairly young (in my early 30's) and it's inspiring to read about how another young person deals with life with RA. Moreover, I live in Toronto as well. Yay. I have started prednisone (15 mg in Feb 2009 then flared when tapering and was put on 20 mg in Mar 2009) and also Plaquenil (300 mg). I'm currently trying to come off the prednisone (I have reached 12.5 mg after a very slow taper). Of course the rheumatologist wants me to start the hard drugs (methotrexate and later maybe Enbrel). However, I have all these dilemmas and fears about these drugs (for life? long term side effects? what if they stop working? what if they cause cancer? etc). Did you ever hesitate starting these drug treatments? I know that the indescribable pain of my flare has convinced me to start even the prednisone but I had huge hesitations even then. Anyway, I start an anti-inflammatory diet next week so I will try to keep a diary so as to see if it makes a difference. This is the first and last alternative treatment that I'll try before giving in and starting on the harsh meds. I'll keep you posted if things improve. Thanks again for taking the time to blog about your experience.
Hi Mirela!
ReplyDeleteWelcome to my blog – I'm glad you found it, but I'm so sorry to hear about your diagnosis.
Re the drugs, it is scary when you read about the side effects, but I guess after going through my experiences with migraine medications and feeling freaked out by the side effects some of them can cause – stuff like heart attacks, stroke, abnormal heart beats, and seizures – I've learned to take things with a grain of salt while weighing the pros and cons of everything.
Yes, there are side effects, but RA also causes damage, much of it within the first two years of onset. I did a lot of research into different treatments and for me, personally, I wanted to do whatever I could to stop as much damage as I could as soon as I could. Also, almost all the joints in my body were affected, and it was only getting worse.
Even now, with the medications I'm on, the pain itself is at times is worse than it was at the beginning. I can't imagine what it would be like without the drugs I'm on.
And, for me, prednisone long-term wasn't an option. I resisted going on it until I couldn't cope any longer, and we were still waiting on lab results and a diagnosis. I know someone with Crohn's disease who has struggled with prednisone, and I wasn't going to go down that road long-term – short-term, OK, long-term, no way!
But each choice is personal, and you need to do what's right for you.
No, I don't know what will happen long-term with the medications I'm on (heck, I don't even know what will happen tomorrow or in the next minute!). But I also don't know what will happen when I walk out the door of my apartment either, or get behind the wheel of my car (which, I think, puts me at a far higher risk of injury and death than the RA drugs do), and so the choice of medications I made was a choice I was willing to make, side effects and all.
Good luck in your choice and do keep me posted on how you're doing – I would love to hear what you do decide and how it's going!
:) Laurie