Tag Archives: illness

Biologics for Crohnologics: Meet Humira

1 Feb

Trial and error. Guinea pig. Game of darts. Playing blindfolded. Pincushion. Russian roulette…. All incredibly unfair statements, but this is how treating a Crohn’s flare honestly makes me feel. Let the record know, I have an amazing doctor, and I am great hands with him.. but the reality is.. Crohn’s has a mind of its own, making it difficult to keep up with – not just for the patient, but for the doctors as well. Every patient’s illness is different, with different symptoms in different locations, which progresses at different rates on a path of its own. Also let the record show, there is no cure for this illness – so managing systems is the only thing a doctor can do you for you. There is no fixing, solving or curing going on. Just alleviating symptoms, in order or medical priority – which of course, also seems to change as a patient’s illness morphs – on its on schedule…

So.. it has become evident that my existing treatment, Remicade, has reached is expiration date. An expiration date that came way earlier than hoped… just shy of one full year. Apparently, I developed antibodies that “block” the medication from being absorbed correctly, or doing the job correctly. (I’m not in the medical field, and sometimes, I will use my own language because that is what I understand, so hang in there with me here…) Anyway, it stopped working….

My doctor had wanted to try one last “blast” of the Remicade, but after seeing me 5 minutes before the infusion, and the level of pain I was in – I decided to decline the final IV. My doctor and nurses all supported this decision and immediately went to work on plan B… Plan B, that wasn’t there a year ago for me (from my understanding). Thankfully, the year on Remicade bought me a little time for the market to introduce more options for my case. Let me specify more FDA-approved options. Don’t you dare hop on Google and search treatment for Crohn’s to prove me an idiot here – don’t forget, everyone’s illness is different so this is not prescriptive like the flu where everyone gets the same treatment regime. I’ll take a win where I can get it.

So, meet, Humira. Humira is another biologic drug, which means it targets specific parts of an overactive immune system to reduce inflammation. This one in an injection versus an IV like Remicade. This one became a good option for me (not originally ideal) because of the joint pain I have in addition to the “traditional” Crohn’s flares, fistulas and fissures. I also found out that most Crohns patients are required to start with Remicade (I do not know why).

This is one of the trainer pens they sent me (plus the actual first injection injection training with my infusion nurses)… Kinda like an epipen…

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Steps are pretty easy… ice your leg/abdomen for roughly 20 mins, take off grey #1 cap, keep flush on skin, do not move pen, take off maroon #2 cap, plunge maroon button, keep flush on your skin for at least 10 seconds, check the little mushroom key-hole. Once window is yellow and line stops moving, remove, (do not wipe blood as you’ll remove medicine), add band-aid and ice for rest of day to keep welts and allergic reactions (expected) down.

So, I packed up my cooler with 4 of these suckers and headed off to my infusion center last Friday. (You are not allowed to give yourself your first round as they apparently need to legally give you training and also monitor you for major reactions during your first shots.) I thought I was ready for an easy 10 minute visit… yea right…

My faithful infusion nurse gave me the first one after icing down my legs… oh my Lord, I was not ready for that. Now, being a Crohn’s patient, I’m used to needles, sticks, bad sticks, giving blood, IVs, bad IVs, giving myself B12 shots… yea, nothing was going to prepare me for 10 seconds of this. I know, you are thinking – Litz, its’s TEN SECONDS, MOVE ON. It was like being stung by a hive full of bees and not being able to run away from it. Then, I had to give MYSELF THREE MORE OF THESE THINGS! I’m really not one to show too much emotion in public, and being a Crohn’s patient, we generally have a fairly high tolerance for pain… but these actually took my breath away. My poor nurse wanted me to slow down, but I just wanted to PLOW through these and get them over and done with…. But at least they were done and KNOCK ON WOOD, I’ll never have to do 4 injections again!! ūüôā Since I did have some welts they needed to watch me for breathing issues for a little while, so I did win a consolation prize of some hot tea and more ice – score.

HINT TO ANYONE STARTING HUMIRA: My nurses advised me to NEVER inject in the abdomen as it will be even worse there.

Image(Top Left: My first delivery of Humira, yes it comes to you house and lives in your fridge, Top Right: My cooler packed with first 4x shots/pens, Bottom Left: Icing down the reaction, Bottom Right: hot tea consolation prize).

I don’t know yet if this will work for me, I heard it can take up to 3 months to work (lord help me if it seriously takes that long…), but I’m trying to stay optimistic that this will help me find remission. I will take shots every other week until I find out, though! Now that the first 4x are done (THANK GOD), I go down to 2x (once), and then the plan is to give myself 1x shot every other week. I’m told these will get easier – here is is to hoping!

But I’m not off the hook tomorrow completely, it is still a shot day for me ūüė¶ Its B12 day for me. This is an easy one, and one I’ve been doing for over a year now. All set up and ready to go for the morning – love these ones! Helps with energy, so maybe it’ll be a good Friday! ūüôā

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FairyTales… Without happy endings?

3 Mar

My favorite part about growing up was¬†tying on my tap shoes and lacing up my toe shoes.¬† No matter where I was, the dance studio, our high school’s stage, my home studio or one of the many stages I competed on, I was able to visit a world full of dreams and hopes.¬† A world unlike the one of reality.¬† A world¬†that melted away¬†the pain of the day – both physical and emotional.¬† I was able to temporarily transform my reality to a creative and peaceful world.¬† This freedom from the pain is also what I miss most about my childhood and my young adult years.¬† Today, my joints, bones and muscles ache too much to withstand a long walk — I’m beginning to think my dancing days are officially over for good.

Today, I look back on my life with anger and the hopeless feeling of being defeated.¬† In high school, I remember explaining to my friends that I understood my family’s turmoil.¬† That I just wasn’t one of those people who was blessed with an easy childhood.¬† I explained that I thought everyone, at the end of their lives, would have all gone through the same amount of pain.¬† I was just going through my pain early in life so that I could be blessed with an easier and happier adulthood.¬† I honestly believed that…. And I still, up until today, believed that, with everything I had.¬†

This week was the straw that broke the camel’s back.¬† This week I finally reached the “ENOUGH” phase; and it made me think back on the trust I held¬†in karma.¬† My trust that things, someday, would get easier.¬† What a joke.¬† They say “what doesn’t kill you makes you stronger.”¬† And “God only gives you what you can handle.”¬† Honestly, I’d like to know why God hates me so much.¬† What did I do to piss off some greater being out there?¬† What did I do to deserve all this?¬†

Yes – this is a very different outlook than my last post…. And I understand how out of character this stance is for me.¬† But enough is seriously enough today.¬† I hope I wake up tomorrow and can find the silver lining in all this again.¬† I hope I wake up tomorrow and want to face the day – anxious to see what the day has in store for me.¬† I hope this denial of the reality of¬†my life goes away – or gets easier to cope with.¬† Because today, it sucks.¬† There is no other way to put it.¬† I think the positive outlook on life is a crock of bullshit.¬† What can possibly be good about an illness without a cure?¬† An illness that strips¬†me of my independence¬†and threatens to strip me on¬†what makes me¬†“me”.¬† It sure doesn’t look like things are about to get any easier, especially when what is supposed¬†to be my “miracle drug” is making me so sick I have nothing left but to vomit stomach bile, makes me lose 75% of my vision for days at a time¬†and makes it too painful to even take the dog for a walk everyday…

Seriously, what did I do to piss off the big guy in sky?

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