Posts Tagged Enbrel
You may recall my last post when I was reeling about United Healthcare’s decision to raise Enbrel from a tier 2 drug ($30 per month copay) to tier 4 ($250 per month). Right before Christmas.
Well, if United Healthcare is Scrooge, Enbrel is Santa.
After hearing the news about the drug costs going up, I sent an appeal to United. It was quickly denied. I then approached my doctor, who was hesitant to switch me to Humira, which had been newly deemed affordable by my fickle insurance. Apparently, going off a drug can make it lose it’s efficacy if you decide to get back on later. And since Enbrel’s working for me, my doc didn’t want to make the change.
Instead, my doctor recommended calling the Enbrel Support Group. I had gotten info on this when I first got on Enbrel, but because my co-pay was inexpensive, I didn’t take advantage of it.
Well, it turns out Enbrel Support has a program that will assist you in your copays. As the kind man on the other end of the phone told me (and, yes, he actually sounded like Santa): “We know Enbrel can be expensive. We want to help where we can.” I almost cried.
He signed me up for an Enbrel Support Card and told me they are starting a brand new reimbursement policy to circumvent UHC’s new stance on not taking “coupons” or support cards as payment. For the first six months, they’ll pay your full copay. After that, they cover all but $10 per month.
This all definitely seemed too good to be true. I didn’t really believe I’d ever be paid back when I refilled my prescription this week and forked over $250.
But now, sure enough, I received a check in the mail for the full amount. Thank you Enbrel Support!!
Seriously, if you’re in the position of struggling to pay your Enbrel copays, check them out: http://www.enbrel.com/ENBREL-support-card-program.jspx
When I first got on medication for RA, I took my methotrexate the day it was prescribed (at one of the most depressing and sober happy hours I’ve ever been to) and my Enbrel as soon as it was approved by insurance and shipped to me. I was so desperate for relief, I didn’t think about what day of the week would be most convenient to take 8 tiny pills that make me exhausted and slightly nauseous. Or which day would be best to remember to take my shot, meaning I needed to be by my refrigerator with privacy, alcohol swabs and an ice pack.
At any rate, I recently decided to maximize fun by cramming it into a weekly drug-fueled night of excitement on what is already the best night of the week: Monday. Just kidding.
Monday nights for me now consist of trying to get a kick-ass workout in after work – usually weights and hip-hop dancing. The endorphins boost my mood and working out makes me feel powerful. That helps combat the feelings of weakness that go along with being dependent on drugs, the confusion I sometimes feel when I swallow pills that I know are both a cure and poison, and the wimpiness I feel when I cringe giving myself a shot.
After that, I make myself dinner and settle in for a night of relaxing on the couch. This is only made slightly less relaxing by icing my leg while my shot warms up, then giving myself my injection of Enbrel. Dinner is only slightly less appetizing when the second course is 8 pills of methotrexate. I find that eating a lot before and a little after taking my pills helps with the nausea.
I also find that some good, distracting TV helps. 🙂
Anyway, that’s my drug day routine. What’s yours? What makes it more tolerable for you?
Also, for those of you that made it through my drug day rant, I have an Enbrel PSA: according to one of the Enbrel support nurses, the FDA has now approved Enbrel to be unrefrigerated (stored at room temperature) for up to 14 days. The only caveat is, once you take it out of refrigeration, it should remain out and must be used within 14 days. For anyone who’s tried traveling with Enbrel (especially on long overseas flights after FAA regulations no longer allow flight attendants to store passenger drugs in refrigerators), this is awesome news.
I was trying to find the post with my Enbrel travel story, but I either never typed it or it’s poorly tagged. I’ll tell it quickly here. When I was flying to Spain I had to take a three hour domestic flight, followed by a four-hour layover in Miami, an 8+ hour flight, a taxi ride, and not being let into our apartment for two extra hours. Needless to say, my ice pack thawed during my layover and my Enbrel travel case was soaked.
This meant tracking down plastic bags of ice in Miami. The best the flight attendants could do was give me a bucket of ice that turned into a cold, wet bucket of water that inevitably got all my carry-on items wet because it had to be stored under the seat but only fit beneath my feet. In all that travel time, the only place that allowed me to use their refrigerator to store my syringes of Enbrel was the cafe in Spain where we killed time. After that fun experience, this news is VERY WELCOME.
I went snowboarding on Saturday. Snowboarding is something that started hurting me years before my diagnosis – ankles, wrists, bottom of feet. If there was any early indication that something was wrong and I had RA, it was snowboarding.
Of course, I didn’t ever go see a doc because of the pain I had snowboarding. I switched to skiing instead.
So Saturday was my first time on the board in two seasons (except for one extraordinarily painful run last year). I’m hmappy to report, it went great!
I only had pain in my feet at the very end of the day, after about 12 runs.
I was elated about this. I felt so powerful and back to myself. I guess I have to give credit where credit’s due: perhaps the drugs are working their magic in ways I don’t appreciate in the day-to-day.
I felt so good, I was able to follow up Saturday with a pain-free day of powder skiing on Sunday.
Hell yeah. I’m appreciating my life today and all the help I’ve had to get me to this point.
One more thing: I have really bad circulation (Raynaud’s Phenomenon & Chillblain’s), so I get painfully cold toes. A skier on the gondola recommended trying SuperFeet insoles to keep my feet warmer. They make comfort insoles too for everyday walking. I haven’t bought them yet, but I think I’ll give them a try, both in my ski/snowboard boots and my everyday shoes.
My Thanksgiving and the last week has been awesome, and I’m so grateful for it.
My marathon training had been off to a slow start as I was dealing with some symptoms, fatigue being one of them. It was really hard to motivate.
My last two long runs – 10 and 11 miles – have been great. I did the second long run on Thanksgiving with my parents’ dog. She’s a great motivator & keeps me going fast.
So now I’m feeling like a marathon may actually be a possibility for me. I’ll be getting X-rays in February, so I’ll be able to see if I’m doing damage, but so far I feel great. I love the feeling of getting out and running. I’m so grateful to live in a place with such awe-inspiring running trails.
Then I spent the rest of Thanksgiving cooking – 2 gluten-free, dairy-free pumpkin pies, 1 gf, df pumpkin bread, and a grilled zucchini/squash salad tossed with garbanzo beans and olive oil. Yum! My family was very supportive of my restricted diet (with a little teasing, of course!). I am consumed with gratitude for my supportive family and friends.
Also, perhaps one of the biggest things I’m thankful for: my symptoms have been really minimal. AND, I’ve gotten the hang of the syringe, so self-injection is finally pretty painless. The verdict: I definitely like the syringes better than the pens. Way less pain, bruising, swelling and uncertainty.
I hope you all are off to a great, pain-free start to the holiday season.
Alright, I’m not proud, but I can’t lie to you guys: It was really freaking hard to give myself my first syringe injection of Enbrel.
I’ve been using the pen injectors since March – 8 months! – but had been having problems with post-injection welts and bruising and button delays/glitches (I would press the top part of the pen and nothing would happen). You can read more about that here, here, and here.
My marvelous nurse (who clearly thinks I’m tougher than I am) thought that I may be ready to try syringes. According to her, patients say the syringes are less painful. Also, since you’re in complete control, you can’t have glitchy buttons or not know if it worked.
So, she gave me four syringes and told me to try it out.
I got home on injection night from a really great dinner date and set up. I was feeling pretty confident. I’d even had some wine at dinner, which I thought should make things a little easier.
I let the medicine get to room temperature, washed my hands, sat down, put rubbing alcohol on my thigh, iced my thigh, pinched the skin, went for the “dart-like motion” to inject myself…and froze. So I tried placing the needle on my thigh, thinking I’d just push it in…froze again. And then cried because I was frustrated. Why couldn’t I just do it?
I texted a friend the pic you see to your left and said I needed a pep talk, to which he replied, “Yikes. You’re a courageous woman. Find the life energy in your fear.”
I don’t know about life energy, but the validation that it was a huge, scary needle made me feel a little better.
I tried again. Still couldn’t make myself do it. At this point, it’d been about an hour and it was a little past midnight. Frustrated and wishing my cat had opposable thumbs and could do it for me, I called my little sister.
She’s as wussy about needles as I am, but she does have an epi-pen (that she’s never used), so I thought maybe she could do it for me. She said yes, I could come over to her (college) apartment and she would try her best to stab me in the thigh. I said I’d give it one more go and call her back.
The thought of driving over to my little sister’s and making her do it gave me renewed inspiration to man-up and do it myself. I would never want to give her an epi-pen! I knew that it would be hard for her to do it, even though it’s not her thigh.
So I looked on YouTube and found this video. Seeing that this big guy was freaked about self injection too made me feel better. Also, his reaction – actually, not so bad! – gave me confidence.
I didn’t do the “dart-like motion,” I just gently put more and more pressure on the needle until it punctured my skin and the full thing disappeared into my thigh. Success! I took a breath and pushed the liquid into me slowly. It didn’t hurt, it didn’t sting, it didn’t even bleed when I pulled it out.
It’s less painful then the pen at least. I think it will go a lot better this week, since I know what to expect.
And for those of you about to self-inject for the first time, I am here to report that it may be psychologically difficult to give yourself an injection, but it really truly is ACTUALLY, NOT SO BAD.
I went for my second acupuncture appointment a couple of nights ago.
I would love to say that it was an enjoyable, healing, relaxing experience. But, in truth, my heart was racing and blood pressure was high before the needles even came out. I’m not sure why – it wasn’t so bad last time.
So my heart was racing, and I was sweating, and my acupuncturist and an observing student (who I had recently met at a party and who now knows way too much about me – awkward!) were sticking me with needles, and I was talking myself down from a panic attack.
Weirdly, the needles hurt more this time than the first time. I felt each one going in, and some of them felt uncomfortable as they were in my skin.
After the acupuncture, they gave me earnest tips on how to improve my circulation – ginger foot soaks, chi generating hand exercises…
They were well-meaning and those things might actually work, but in that moment I was so overwhelmed. How many things can I try? What other ridiculous suggestions is the world going to throw at me?
So leaving the acupuncturist, I just felt depleted. Every part of me felt heavy and I felt overwhelmed with emotion.No matter how much you do, how many new things you try, how much sleep you get, how kind you are to your joints, how much effort you put into positivity, there’s always one more – one hundred more – things you should be trying.
It was enough to make me want to curl up in a ball under my covers and cry.
The following morning I saw my rheumy. The report was more of the same – I’m improving, I’ll improve more. Things will get better.
I’m due to get X-rays in February and am very curious to see how those will go.
He did say that he’s doesn’t think going down on meds before my marathon (March 17th) is a good idea, which is disappointing, but I understand the reasoning. I don’t want to not be able to do the race, and I don’t want the race to do more damage than good.
I told him about the problems I’ve been having with the Enbrel pen (button not depressing correctly, bruises and welts, etc.) and my wonderful, amazing, patient, kind, God-send of a nurse gifted me four Enbrel syringes to try out. I am about to do my first one (post for tomorrow!) and am so nervous, I’m procrastinating by writing this.
The beauty of the syringe is that you have complete control of when the medication enters you and how fast. The downfall is that you have complete control and you get to see the whole thing. AHHHHHH!!!!!
I’ll let you know how my injection goes…
GRIT: noun – firmness of character, determination or strength of character
I think some people are born with a natural abundance of grit. I think my grit, the will to persevere and the optimism to keep going is learned, practiced and fickle.
I’m still trying to figure out why sometimes I’m so strong and determined, and why other times I want to pull covers over my head and never leave my bed.
I think something about the beginning of October triggered the ostrich response in me. Suddenly I bounced from I can do anything to I don’t want to do anything anymore.
When I was diagnosed with my RAD new disease back in March, my doctor marked autumn as the time when I could possibly be in remission and we’d be looking at getting off the methotrexate, and later the Enbrel. My September doctor’s appointment was instead met with an increased dosage of methotrexate and the news that the MTX may not even be working yet. Doc’s new goal for remission: spring 2013.
That’s actually kind of good news because it means when it starts working, I’ll feel a lot better. But also, really?!?!
I left the doctor’s appointment feeling fine about it, but then October came and all optimism drained out of me. I was suddenly so, so, so done with MTX day and freaking injections. All things gluten appeared appetizing, dairy seemed impossible to avoid, my vitamins made me nauseous, and I felt like if I even had to look at fish oil again, I’d vomit.
What’s the point? What if it doesn’t go into remission? Am I really going to do all of this forever? I don’t want to have this life. I didn’t ask for this. F#@! RAD and all the stupid S**! that goes with it.
I stopped taking the vitamins and I laxed up on the fish oil. I cheated on my diet. But I kept going on the drugs.
My negativity quickly started to annoy the hell out of me. So there I was, standing over my morning folic acid and fish oil supplements, a wave of nausea overwhelming me, and I snapped. Out of it that is.
My grit was back.
What’s the point? The point couldn’t be more obvious or important – it’s my health. Is it worth trading because I’m a wuss about injections, I hate swallowing pills, and the smell of fish oil is gross? Obviously not.
So I’m staying the course. I’m back on track. (Although I am being a bit more relaxed about supplements for my sanity’s sake.)
I’m thinking March is gonna be a great month for me. I’ll be running my first marathon and hopefully I’ll officially be declared in remission and will be breaking up with methotrexate. Maybe Enbrel and I will even get to say goodbye. Here’s hoping.
In the meantime, I’m happy to report that I think the higher dose of methotrexate is starting to work. My compromised immune system and the changing season has led to a cold, but otherwise I feel great. No joint pain, no feet pain, less fatigue, less trouble sleeping. I even went on a 12 mile run a couple weekends ago.
Now I just have to figure out how to keep my grit from disappearing on me again.
Maybe this is the answer to my last blogpost on the woes of self injection. Replacing needles with lasers and a puff of air? Sign me up!!
I’ve been doing so well on my Enbrel injections that I started thinking I totally had the hang of it.
Last night, I stuck to the routine. I took my shot out to let it warm up, I tried to relax. I iced my right thigh and sterilized the chosen injection spot. I checked the expiration date and looked to make sure the liquid was clear and the little bubble was acting like it was supposed to. I took the lid off the pen and pressed it to my thigh.
And, boom. My heart starts racing and my thumb REFUSES to press the blue button to release the needle. What the hell? I’ve done this a bunch of times now. I know how much it hurts (yeah, sometimes it hurts quite a bit, but I know I’m able to deal with it).
I actually had to talk myself down from a full on panic attack. And then, of course, I got frustrated at myself for not being able to do something so simple. I put the pen down and paced my apartment, trying to calm my nerves.
Finally, I was ready to try again. Pen on thigh, my thumb pushed the button. NOTHING. I hate when this happens. I mentally prepare for the shot, and you push the button and for some reason it doesn’t release the needle. Ugh.
It took a couple more tries to actually get it. Re-positioning the needle, trying the button… When it finally did go, of course I wasn’t prepared, so I was a little surprised and probably pushed on the needle harder than I should have. End result: painful injection (it stung more than normal, bled a bit, and I wouldn’t be surprised if it bruises), mentally exhausting, and I’m dreading next week.
I don’t want to discourage anyone. There is a part of me that knows the weekly injections are an easy task that I’ve already mastered. I shouldn’t make it such a big deal.
Anyone have any tips for getting over the mental block of self-injecting? Or tips on making the experience less painful? Thanks to all of you! ❤
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!