Posts Tagged Enbrel
I filled up my first sharps container and sent it away in the mail today. I gotta say, I felt a glowing sense of accomplishment. Damn, that’s the number of times I’ve stabbed myself in the thigh, the number of pep talks I’ve given myself, and how far I’ve come.
So I deserve a gold star, or a gluten/dairy free cupcake LOL.
On that note, I wanted to tell you that I’ve had two weeks of perfect injections. No blood, drama, pain or swelling. No freakouts, tears, or anxiety. Here’s my new process: let the needle warm up for half an hour – definitely not less. When it’s even a little cold it stings more and I think it results in more welts. While it’s warming, preferably by the bathtub, I do something relaxing and distracting. A foot bath or read or both. About five minutes before, I ice my thigh. Then, during the shot I pull my skin a little tight, take a few breaths to relax and always press the injection trigger on the exhale. Afterward, I’ve been applying a natural, plant-based anti-swelling ointment that I found at Pharmaca. I think it does help reduce swelling.
Anyway, hope these tips help you. And congrats to all of you who have already reached your first sharps container milestone!
First of all, I want to say that I love my rheumy. He is always optimistic about my improvements and the possibilities of getting better. As he assured me during our last visit, “You’re probably 80 percent improved since the first time I saw you, but I promise you will get much better from where you are today.”
Hearing him say how far I’ve come is a great reminder to appreciate your victories instead of focusing on what still isn’t perfect. So I had a small celebration for the realization that it’s been more than a month since I’ve had severe morning stiffness – woohoo!
I’ve made progress, but I have a ways to go. It sucks that I was in the middle of a mild flare when I saw him (still am), which is effecting my feet, wrists, energy and digestive system (or is that the meds, ugh). It made it all the more frightening when he said I have to go down to four methotrexate pills per week from six because the results of my liver function panel weren’t good. I just hope that going down on the meds don’t make my symptoms worse.
I asked him if my current flare might be related to the 10K I ran over Memorial Day weekend, to which he replied, “You can drive yourself crazy trying to figure out what causes what with this disease.” True, and I know that I’m guilty of this.
I explained that pre-diagnosis I was planning on training for a marathon in 2013, so I was worried that running wasn’t good for my body. He encouraged me not to give up that goal, which I love him for. So I guess despite the pain (it usually hurts after, not during running) and fears of making it worse, I’ll keep the goal and see how my training goes.
I also asked him about a weird blood burning sensation I’d had in my arms, especially near my elbows. That one stumped him a bit, but he said it wasn’t a concern unless it was happening frequently. If the symptoms are frequent, one concern is that the Enbrel is causing some sort of neurological side effect (great…). I haven’t had it since then, so I guess I’ll follow the “don’t worry” advice.
One more thing of note, I must of hit a blood vessel or vein giving myself my Enbrel shot last night because it bled, a lot. Eww. Aside from being gross (I’m a total wimp when it comes to these things), it’s fine. It barely even bruised compared to some of my less bloody shots, so go figure.
My takeaway from all this is to try to worry less and really, really try to not let RA rule my life, choices, or mood. Easier said than done, but that’s what I’ll try to do.
EDIT: Just want to add that during my first run after this doctor visit I choked on a bug – it just flew down my throat, gross! And so, another lesson (channel Stewie – What did you learn?): a) don’t run with your mouth open, and b) don’t run at dusk. Let’s hope this isn’t a bad omen for my training, haha.
I’ve had two more reactions to Enbrel injections. The injection itself usually goes fine (except for this last time when the blue button wouldn’t push down again and it seemed like the liquid went in too fast…), but then the injection site starts to itch and turns into a big red welt that’s both itchy and painful.
The last time it happened I contacted my doctor. I’m lucky enough to have a doctor who is available via email. This is great and I applaud him for answering my questions so quickly. The only problem is, along with the promptness, he can be very abrupt. Sometimes that stings.
His reply to my question about the welts and whether or not I should be concerned or if he had advice was a very short, “…it’s pretty common. Hydrocortisone is fine to use. Let me know if you want to switch drugs.”
No I don’t want to switch. Not if this is starting to work (Is it? I’m not always sure.). The last thing I want is to start treatment again and get used to another drug. So I took it as a sort of “stop complaining” message.
About an hour later, the nurse from my doctor’s office called and said that she knew the doctor had been in touch already, but she had some thoughts. She told me that it could be that I was applying too much pressure to the pen. She suggested holding it more lightly.
It wasn’t much and I’m not sure it’ll work, but man I loved her in that moment. She took the time to realize that I might be looking for more help than he’d given and to offer real, heartfelt, personal advice.
Thank you to her and all the kind nurses out there. We don’t thank you guys enough.
In the last post I said I’d become a stabbing pro. I may have exaggerated a bit, but I will say that it has gotten much easier. It still hurts and it’s still not fun, but I don’t have to give myself a five minute pep talk before injecting myself anymore. I don’t have to countdown from 10, just to start the countdown again (it only takes the one countdown). I just take a deep breath, breathe out and press the blue top of the injection pen, count to 15 as the medicine flows in and I hear the second click and, walla!
I will share a few slight incidents in the Enbrel Chronicles however.
First up, traveling with Enbrel.
My third shot would find me on a trip to Costa Rica, which meant traveling with a medicine that had to be refrigerated but couldn’t be frozen. I packed it in my backpack with the Enbrel travel ice pack and a larger ice pack. This actually stayed cold enough to make it through six hours on a plane and five hours in a car.
I lucked out, because in Costa Rica I had a fridge in my room. When we arrived the room wasn’t ready, so the very, very nice woman at Hotel Luna Lleyna in Playa Tamarindo (I highly recommend this place, but that probably belongs on a different blog) stuck my medication in the beer fridge. When the power randomly went out for a day, she filled a big container with ice to keep the medication cold.
All of this refrigeration was a bit of a pain, but dealable. Laughably, when I finally gave myself the injection, I didn’t let it warm up enough – it didn’t quite make it to room temperature – and the shot hurt quite a bit and left a bruise that lasted for the rest of the trip. I won’t make that mistake again!
Second, the glitchy blue button…
I was feeling confident about my injection after Costa Rica. I had done this a few times. It hurt, but it wasn’t that bad. I also now knew to make absolutely sure it was at room temperature, so I let the pen warm for 35 minutes before sitting down to give myself the injection. I did my little internal pep talk (not the five minute version, the 30-second elevator pitch version) and my countdown and pressed the blue top, nothing. I adjusted the pen, did the countdown, and pressed again, still nothing. I did another countdown, changed my finger placement and pressed again, nothing.
I began randomly pushing it from every angle, nothing, nothing, then randomly CLICK! I think I visibly jumped, but did manage to hold the pressure to my leg.
Not sure why it was so glitchy, but some of the medication definitely ended up on my thigh rather than in it.
Finally, a weird injection site welt.
After the startling injection the week before, I was a bit nervous, but this injection turned out to be easy and pain free. I was relieved. I felt I was finally making headway.
Then, about 12 hours later, while at work I may add, my thigh started itching. I was wearing a skirt, so I scratched and was appalled to find an orange-sized welt at the injection site. I Googled it and found it was relatively common, so I refrained from freaking out.
I used hydro-cortisone cream and the welt eventually turned to a bump and eventually faded (it took about 24 hours for it to disappear). I’m hoping that was a one time thing, but I’ll keep you updated.
Alright, I have to admit I’ve been a bit of a slacker at updating this blog in real time. By now, I’ve (almost) become a pro at injecting myself with Enbrel, but I wanted to share my experience of my first injection.
OK, so first the good news. After some runaround with my insurance (and contemplating the worst case scenario of having to move back home because of expensive drugs), I got approved for Enbrel at only $30 per month. I was thrilled. I immediately filled my prescription.
Now the not so fun part… I went to the nurse to learn how to inject myself. I was nervous. I hate needles. In fact, one time, when my little sister was about 7 and I was 16, the nurse had me get my flu shot first to show her how “easy” it was. I nearly fainted. (Embarrassing, I know.)
Anyway, the nurse was very sweet. She sat with me and gave me all the information – the injection sites (I’ll go for the thigh, thank you very much, the stomach still freaks me out), warming the Enbrel to room temperature, possible problems and side effects (that part was scary). Then she informed me that I would be giving myself my first injection.
I went a little pale. Yes, I know I was there to learn how to do it, but I thought she would just tell me and then give me the shot. After all, it was my first one! But no, the nurse kindly informed me that “it doesn’t matter how long it takes – and there are no cameras in the room, so if I want to cry, I can cry – but I wouldn’t be leaving without giving myself a shot.”
I gulped. We practiced with a needleless pen. The thing I had the most trouble with was applying the right amount of pressure and not getting startled by the “click” noise. Finally, I felt I was ready (mind you, this was about an hour later). I got the pen ready, held with one hand perpendicular to my thigh, the pressure making the blue tip disappear into my skin. Then with the other hand I pulled the trigger (OK, that’s a little dramatic, I just pressed the blue button). I heard the click, counted to 15, and watched the blue replace the clear liquid in the pen’s window. Then I released, my first shot over, a spot of blood on my thigh.
Yes, it hurt. Yes, it was gross. Yes, I was a bit shaky and white. But I was elated and proud. I had “graduated” from stab school. I had conquered my fear. And hopefully this was the beginning of beating my RA into remission.
I finally had my appointment with my rheumatologist today after a week of going through potential outcomes. I brought my mom with me to have another pair of ears and the support.
The diagnosis was immediate: “You have rheumatoid arthritis.”
I can’t say it didn’t suck to hear it like that. I’d expected a little bit of mystery, deliberation, maybe a “you’re OK.” But I also can’t say I was surprised. I nodded as he went over the reasons why he was sure – positive for rheumatoid factor and anti CCP, bone erosions, clear inflammation.
Then he asked questions that shed a light on ALL of the symptoms I’d been feeling but hadn’t linked to my “sports injury.” Have I been tired? Down? Depressed? Experienced insomnia? Anxiety? Stomach issues? Yes. Yes. Yes. Yes, yes and yes. Majorly. Dry eyes and mouth? No (something I don’t have, yeah!).
I walked away from the appointment with a diagnosis, a plan and an odd sense of hope and relief. My rheumy believes we can get this into “remission” in six months. My rheumy says I’ll be able to have a family in the future if I choose to. My rheumy says that we’ll minimize permanent damages. That there are a lot of good drug options.
So, of course I left the appointment sad, with a million additional questions and overwhelmed at my new drug plan – A cancer drug? Giving myself injectables? But I was also relieved to be doing something and to have a name to put toward everything I’d been feeling.
I promptly filled my prescription for methotrexate, prednisone and folic acid and started the process for getting insurance approval for Enbrel.
I went to happy hour with my mom and close friend, nervously going over the prescription info and bringing my friend up-to-date.
And then, with a ton of trepidation (Is this severe of a treatment really necessary? What about the side effects? Will it make a difference?), I popped those six itty-bitty MTX pills and began my new life. A new life on drugs, but also a new life on the pathway to some sort of relief and recovery.