Starting an immunosuppressant

This week I took my first dose of humira, a medication that will suppress my immune system in the hopes to lessen inflammation.  It’s been a long time coming and isn’t a decision a patient or doctor take lightly.  A lot of people are nervous to start this kind of medication, but a lot of people do really well on it.  The more info out there about it, the more confident someone can feel about choosing their therapy so I felt the need to put my experience out there.  (Although the drug company is amazing and provides you everything you need including a very competent nurse that can answer any questions you have.)

First off, why am I even taking this?  I’ve spent the last 3 years (ish) trying to sort out gut problems.  Ended up that I have crohns that is mainly in the higher part of my intestines, which is (according to my doctor) responds better to treatment.  After some time on Pentasa, things have really settled down.  Totally awesome, however in December I started having swelling in my knees and they’d get red and super hot.  We ruled out other causes with the rheumatologist and decided that it was most likely caused by my crohns.  We tried some other meds, one which led me to discover that I have a sulfa allergy and the other being one I can’t stay on for long periods of time.  Ultimately it was decided that humira was my best bet at getting back to normal.

Now you may be asking yourself why still, it doesn’t sound that bad.  I get it.  Other than the stupid amount of other issues I have going on, inflammation is bad.  Long periods of inflammation are not good for you.  It can cause damage and increase your risk of cancer.  (Although, I guess everything causes cancer so…)  The one thing I can always guarantee you is that my inflammatory markers are going to be high no matter what.

The process for getting the medication was confusing, but there was people that helped.  Humira is a special medication, my insurance required a prior authorization from my doctor, and it’s shipped directly to you from a specialty pharmacy.  The guy that I talked to at my insurance..  well, I’m pretty sure he didn’t really know anything that I was asking.  With the guidance of my humira nurse, we got it worked out and I had my medication by the end of the week.  A big plus is that humira gives you a card to help you pay for your copay, even if you have private insurance.  My starter box with 6 pens only cost me $5.  I thought I was going to have to pay $150 a month for my regular dose, so I’m a happy camper.

First injection was four shots.  That’s a bit intimidating, especially for people that aren’t okay with needles.  Thankfully, needles are the one thing I’m super comfortable with.  That sounds bad…  I’ve drawn blood, accessed IVs, and used syringes working in the hospital for over  5 years so it’s no big deal to me.  If the sight of a needle just freaks you out, you’re in luck!  You won’t even see the super small needle because it’s covered by a sheath the whole time.  Of course it’s going to burn, but shots tend to do that.  Give it a minute and you’ll be alright.  Some people even try to numb the area with an icecube prior to giving themselves the shot, so that might help with it.  The worst part about it, to me, is the gurgle noise it makes as it’s pushing the medicine in.  Super cringe-tastic, but I’ll take it if that’s the worst thing about it.

Hooray for me, no reactions at all!  Just bled a bunch on one of the four sites, which is no biggie, it happens.  It can take a while to notice any changes, so I’ll patiently wait.  I will say that I felt the most awake I’ve been in forever on day 3 and even made dinner without my knees flaring up.  Of course today (day 4) Aunt Flo decided to kick my ass, so we’ll have to wait and see if there’s a trend.

I’m excited to maybe get back to feeling a bit normal again, but I’m not going to hold my breath.  I’m just glad it’s going to be super easy to make a part of my routine.  I will have to hound myself at work to make sure I’m using all my PPE because we get a little relaxed about it back in the microbiology department.  Being that I work with things that make people sick all day, I was most nervous about work and getting sick and blah blah blah.  My humira nurse told me that she had many patients that work in the hospital, some in the lab, and they hadn’t had any more trouble than anyone else.  So that helped put my mind to ease.

Of course this medication isn’t for everyone and you have to take into consideration a lot of different factors.  If you are doing research and trying to making a decision, I hoped this helped some.  If you have any questions, reach out.

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Medication – A necessary evil

I’ve been constantly on some sort of medicine since I was 13.  That makes it 10 years thus far.  That seems absolutely ridiculous…  At one point I had a huge pill organizer, like you would see an 80 year old with.  And I honestly couldn’t even tell you what all I have been on; doctors try everything to treat Fibromyalgia.

I think the most frustrating problem that I have with all these medications is that I’ll find one that works for a minute and then it suddenly stops working or the side effects start kicking in.  I tried Lyrica, you know, that medicine you always used to see commercials for that was specifically for Fibromyalgia.  I didn’t do so well on that.  I was afraid to take it in the first place because I heard of all the horror stories about peoples’ faces swelling up like crazy.  I wasn’t so unlucky, it just raised my blood pressure so there was another medication I had to take and it just wasn’t worth the trouble.  The point is the same though, all the medications end up sucking.

I remember a couple years ago that I got so excited because I was finally back down to one pill a day.  I think that lasted maybe a year…  Maybe.  I felt so free.  How silly of me to think that would last.  I think I actually thought the pain just wasn’t there anymore.  Now I’m back up to taking 8 medications.  Shit, I back peddled.

Sometimes I feel bad about it.  I mean, it’s expensive and I’m putting all this shit in my body.  I had a “friend” that basically told me that I’m a druggie because of all the medicine I’m on.  Let’s just go ahead and point out the obvious fact that they are a totally ignorant douche.  Anyways, that makes me not feel bad anymore because fuck that thinking.  Seriously.  I’m just trying to feel normal like everyone else.  I’m not spending all this money to feel amazing, I just want to feel normal.

In conclusion, all the medication is journey in itself when it comes to dealing with chronic illnesses.  It’s awful, but when it works out it’s great.  People will make awful judgements, but let’s see how they act if they had to deal with this.  Don’t feel bad and don’t get discouraged, you’re just trying to feel normal.