Since last week’s post Hurry Up and Wait, my Crohn’s Journey has entered the new chapter of Humira and hoping for remission.
Our Labor Day weekend consisted of homework and coloring my hair green, and not much else. I hate that Philip’s holidays and long weekends are ruined, but he doesn’t seem to mind doing nothing with me. (Yes, Green Hair! If you’re not following me on my social media sites, you’re missing out!)
I planned to call the VA on Tuesday, to see about the status of my bloods and x-rays because I still had no new information and I received no calls from the VA last Friday.
Tuesday marked 2 weeks, to the day, from when my blood test’s and x-rays were done, so I knew they were back by now and they had to be reviewed by now. MyHealtheVet showed multiple tests in my online database for the VA, so I called them.
I was transferred to telephone care, and I was told to leave a message, that Joanna, the GI case manager, would get back to me soon. You know, the usual song and dance that we do when I call the VA.
I don’t know if my relentless calling over and over had any effect, but she returned my calls a few hours later.
When I spoke with her, she had told me that there had been an issue and that’s why there was a delay for the past 2 weeks, but I had finally been approved for the Humira.
The delay was that the blood tests ordered for me we’re not all correct, that one of the tests they needed for the Imuran (Azathioprine) was not completed, and so I needed to come and have that blood draw done. This style test was sent out of the VA to complete, so I would not start the Imuran until after the results returned. Besides, it can take 3 months to start working, anyway, so what’s another week or so?
We decided that Wednesday would be a good enough day as any to go in and get bloods and to get my self-injection training. I would also get my first four Humira injections, the loading dose, and so Humira Wednesdays begin! I will have to do this every 15 days and it is easier to explain that my medication will always be on Wednesday’s, every other week, hence Humira Wednesdays.
And, since something always has to happen with my care, we had to sit in the pharmacy waiting on my Humira for what seemed like forever. The pharmacy had left out my Humira, (it is refrigerated) but they had left it out overnight.
Now, Humira can be left at room temp up to 2 weeks, but I was supposed to take 4 shots today, and then take the rest home with me, my next month of doses. The pharmacy leaving them out would have caused them to ‘spoil’ before my next injection, so, we had to wait to replace them and put them in a cooler for safe keeping. I need a mini-fridge for all of my refrigerated medications!
Hopefully, they didn’t throw the warm injections away but used them for someone else who needed it sooner than 2 weeks. They are very expensive shots and one of the most expensive drugs in the world. I read they cost roughly $2400 for 2 injections and up to $20,000 for a years supply. Yikes.
This was slightly helpful in a way because people recommend the shot be at room temperature before injecting, to hurt less, so I was grateful it wasn’t freezing cold. And I was receiving the Humira pens. I was beyond ecstatic to get the peons rather than the syringe. It looks easier and you don’t necessarily have to stare at the needle this way.
After pharmacy and stopping to give my blood samples, to the GI clinic we went.
Upstairs, I was seen by a nurse and there was really no injection training at all. She injected the first shot into my stomach, so I could get an idea of how to do it and what to expect from the medicine, and I gave myself the next 3.
We decided on a square shape for the injection sites, with each injection on 1 of 4 quadrants, since you can’t inject in the same spot twice. Next time, I’ll inject at North and South of my belly button, respectively. I even have an app to keep track of it all!
Humira, it was not pleasant. It hurt, but not in the way you think of pain, but more like a bee sting or the peanut butter shot you get in the Navy. Ouch. It leaves a hard lump of medication under your skin that’s tender to touch, and you have to leave the needle in your skin for 10 seconds as the medication is forced in.
You can HEAR the medicine entering your skin because it almost gargles. You want to pull it out, move, let go of your pinched skin and just be done with it after you press the button and feel the medicine. There is a little yellow marker in a window to watch, and the marker slowly moves down the pen. Once it reaches the bottom of the pen, you’re done and you can remove it. You can HEAR and feel the medicine and leaving the needle in for 10 seconds while everything is happening is harder than you think.
After giving myself the first injection, technically the second injection, I didn’t want to do any more of them. By this point, my nerves gave in and I was so overwhelmed, that I cried.
I remember looking down at my stomach, pinching the skin and preparing to inject myself. I remember thinking “Can this really be what I’m going to have to do for the rest of my life? Could this really be something that I’m having to do to myself? Something I AM doing to myself?”
You think it’s going to be super easy, that you are not going to have any emotions or feelings about it, I thought I’d be good to go, but once you get put into that situation and you’re looking down at yourself, injecting medications via an Epi-pen-look-alike, it really is eye opening. This is what my disease has led to. Damn you, Crohn’s!
I finished the next two injections with teary eyes and shaky hands, with Philip beside me opening the injections and getting them ready for me, so that was extremely helpful. And that was it, 4 injections, and we wait until the next dose.
I was told to expect fatigue, vomiting, and issues like that since it was a large dose of medication. My muscles could potentially ache, and it could give me migraines. Luckily, I took my migraine medication before the shots, and I took my nausea meds after them.
I didn’t feel well yesterday, my entire body kind of ached, but that was assumed to happen after such a large dose of medication. My stomach kind of hurts today, too, with my normal issues happening, but we are very hopeful that I will start to feel well soon.
I did not get any injection site swelling and so far I have not had any allergic reactions. I have to do this again, with 2 shots in 2 weeks, next time at home with my Humira life coach.
Now, my Humira life coach, this is a whole other story. I met with my original life coach 2 weeks ago, but I haven’t really mentioned it because there was some drama with that appointment. To be blunt, the representative was on what seemed to be pain medication, opiates or painkillers. Now, Humira is investigating, so I won’t name names, but it has been nuts and stressing me out, to say the least.
The representative was late to the appointment, her mannerisms were very awkward, and it gave me flashbacks of my childhood with an addict parent who’s go-to was pain killers. Her pupils were pinpoints, nonexistent even, and her train of thought was constantly interrupted. She was not 100% in reality. The representative Googled puppies and she barely mentioned Humira in her visit.
I sat at the kitchen table in shock, texting Philip about what was happening and watched like a car accident happening in front of me. I did not feel comfortable with her, let alone comfortable enough to receive training or shots from her.
I had mentioned to Philip that she may come to the house again for my later injections, so either I wanted him to be present for that visit, to make sure I wasn’t just judging this lady, or I was going to have to call Humira and tell them. Either scenario sucked and I avoided them both.
She had called me about a week after her visit, to see where I was in my Humira journey, to find out when I would get my meds and when I would start, and I had refused to return her calls. Even her voicemail messages gave me that uneasy feeling and I could hear the lull in her voice from the drugs. The whole situation has been crazy!
It wasn’t until Wednesday morning that someone from Humira called, asking what was going on with my treatment plan. Don’t worry, I DID inform Humira of the messy situation and why I hadn’t called. I did not want to affect this lady’s life, but when her medication starts to affect her job, and patients like myself notice it immediately, it’s safe to say she has a problem that affects her job. So, I cannot feel bad for bringing it up with her employer, especially with the uncomfortable feeling she left me with. I’m sure the investigation is not pleasant for anyone involved.
I did not want to affect this lady’s life, but when her medication starts to affect her job, and patients like myself notice it immediately, it’s safe to say she has a problem that affects her job. So, I cannot feel bad for bringing it up with her employer, especially with the uncomfortable feeling she left me with. I’m sure the investigation is not pleasant for anyone involved.
Of course, only this kind of stuff would happen to me…
Otherwise, I’ve thrown up just about every meal this week, I have lived on my migraine medication, and my joints are constantly hurting, especially my hands and my poor pinky finger, oddly enough. It’s double the size of my left pinky finger, but I will see MSK for my carpal tunnel in a few weeks and I’ll bring it up then. My skin is the same, breaking out at random times and places, but my dermatology appointment is coming up soon, too.
For some TMI, I’ll begin my birth control today, for those keeping up with my non-existent fertility journey at the moment. I consider this whole situation a jab at my emotions, considering this week should be the prep for IUI, but it is not happening. Next week would be the insemination, but it is not happening. Instead, the exact opposite. It’s heartbreaking.
Sadly, I guess you could say this week has been normal, at least for me. But, It Could Be Worse.
Please Like It Could Be Worse on Facebook for Updates!
I did get all of my info for my 23andMe DNA test!! I will be writing a specific blog post for that information today, too, so that should be live sometime this weekend or early week?
And, I did get info for the Take Steps Lexington Walk for Crohn’s and Colitis on Sept 18, too. It’s only 1.5 miles and for a great cause, so come join the It Could Be Worse Team and hang out with us and Bilbo for the afternoon!
But if you’re going to donate instead, We now have a fundraising page for CURE for IBD! 100% of ALL donations will go towards research! If you can, make a donation and help us find a cure for patients like me suffering with IBD, Crohn’s and Colitis. Think of it as buying me a drink or something – $1, $5, $10, every bit counts! Donate here!
Mark September 18th on your calendar!
This Event at Churchill Downs is a week later, on September 25 at 1 P.M. This is the 2nd Annual Fun Day for Crohn’s and Colitis Foundation.
And as always, any information you’d like to offer up about Humira or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
Please Like It Could Be Worse on Facebook for Updates!
Thank you for reading, and for keeping up with My Crohn’s Journey.
More Info On Crohn’s Disease at
www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com
Previous Posts on It Could Be Worse:
Frankie, Myrtle, and the Double Balloon
Also on Huffington Post.
Great blog! I too am a Crohnie and had first loading dose of Humira two weeks ago tomorrow. My wife, who is an RN, gave me the shots in my upper thighs. The pain was significant and the rush of the fluid under the skin at the injection site was very gross to feel. It’s like the inverse of popping a big zit. Anyway, I felt very fatigued for a couple of days afterwards, but other than that, I’ve been doing better. It’s starting to reduce my symptoms and I’ve been in a bad flare for over a year.
I hope that Humira works for you!
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Thank you for reading and sharing!!! I am soooo happy you are finding relief. I heard the leg hurts more, and to go slow if you have the syringes. Also make it room temp and ice the location before! Your zit analogy is so correct!!! I felt pretty bad after too, so I get you on that! I actually had worse symptoms days later, but I’m hopeful! Definitely not looking forward to more, it was very very “gross” to feel! Luck to you too! 🙂
I had my loading dose of Humira yesterday – hoping for great things!! What’s the app you’re using to track where you’re injecting?
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The app is Complete, you’re Humira rep can give you a password for it? I hope great things for you as well! Let me know how your treatment is going!
I have psoriatic arthritis and have been on injections for about 15 years, currently taking Humira weekly (BTW it costs $2500 per injection) anyways I have found it easier and less painful with the pre-filled syringes than the pens. Those pens hurt like hell.
I’m glad they’re helping you! I think I got the price right? I know the automatic shots hurt and stung! But, I had allergic reaction and stopped taking it. I’m on Stelara, now, so fingers crossed it helps! Good luck! 🍀