Humira, fighting my chemistry and waiting.

I’m back for my obligatory 3-month posting!!  Lord help me if I ever decide to keep up with things like I should…

So tonight is my 8th injection of Humira…  and I am frustrated.  I started Humira with a booster pack, so I had 4 shots then 2 weeks later I did 2 and now I do only 1 biweekly.  Within a couple of days of the first dose I had immediately noticed my brain fog clearing and I was feeling more energetic.  Since I’ve gone down to one shot, the brain fog and fatigue is back to where it was.  The whole reason I went on it was to help what we believe is joint pain associated with Crohn’s and it never really touched that.

Of course, Humira takes time to build up in your body.  I went to my 3-month appointment completely expecting to change up the treatment plan, but nah, 3 more months of waiting.  (Side note: waiting is my whole life.)  They repeated some labs, which they still haven’t gotten back to me on…  but it looks like the inflammation markers for my intestines are back in the normal range which is great.  I still have some labs that are perplexing, but I need to discuss those with the doc to see what she’s thinking.

In my mind, I’m thinking that we just ruled out Crohn’s as the cause to my joint inflammation and pain…  but who knows.  I was so desperately hoping this was the solution to 15 years of all-over aches and pains.  So the journey continues…

A recurring event in my journey is going back and forth between trying meds to help and then deciding that I’m better off without them.  I’ll try what the doctor suggests, we’ll make some changes for a while..  they’ll usually just cause side effects and not really help anyways and after a year or two I’ll just throw my hands up and go down to the bare minimum of what I need to function.  The least I’ve ever been on as an adult was 2 – birth control and allergy meds.  Oh the fucking freedom!

So, having more reasons than the usual ‘None of this is working anyways’, I ditched everything minus vitamins and medicine to keep Crohn’s and GERD in check.  The first thing I did was work on getting off of my antidepressants.  For those of you who don’t deal with chronic pain, yes, doctors prescribe antidepressants to treat chronic pain and that does not equate to “I’m in pain because I’m depressed.”  Do some research if you need.

I was not prepared for what my body was about to go through.  Previously I had missed doses of a similar medication and it caused a weird electrical sensation to pulse through my body.  Super weird, kinda messed with my head, but not a big deal.  This time I was coming off of 2 antidepressants and at the end of tapering down I ditched my birth control too. (The BC is important, we’ll get to that in a second…)

The electrical pulses got super intense, I felt dizzy most of the time, definitely had the fish bowl thing going on and it made my super depressed to the point where I was absolutely scared for my well being.  This all also blew my aches and pains way the fuck up.  This shit was serious and my doctors gave me no warning before they prescribed it or when we were making a plan to tapering off.  The worst for me was the Cymbalta that I didn’t even want to really try in the first place, but two of my doctors were pushing for so I agreed to give it a shot.  If you’re ever interested, do some research into Cymbalta withdrawal.  The pharmaceutical companies don’t really address these and don’t offer an actual plan or forms of the medication to taper safely.  I am so thankful that mine only lasted for about a month.  Some people deal with this for so much longer and, honestly, I don’t know what I would have done if I had have dealt with it for longer than I did.

I think stopping my birth control also made it worse.  I had legit been taking some kind of pill, had an implant or on the ring for a good 13-15 years without any break.  I had my reasons to do it and for the timing.  I don’t regret it.  I was having some issues, for which I’m still scheduled to have surgery because of and rather not go into full detail about.  I did some research after my last exam because the doctor pointed out something that no one had mentioned before.  In my readings, I saw that they casually mentioned that birth control maybe could cause it and that it maybe could cause some of the issues I was dealing with.  So fuck it, that’s an easy thing to try for something that is making part of my life complete hell, might as well try it.

I should get a goddamn doctorate.  When my doctor mentioned it, he acted like it was nothing and I didn’t need to get it fixed.  Seriously dude.  I swear, I stopped my birth control and it has completely went away.  I even feel like I can feel emotions again kinda.  Like, what is that?  And I was taking this for how long and no one thought maybe I should just not for a minute?  I just cured one of my goddamn ailments, that’s amazing, why has no one else been able to figure this?

So here we are.  Currently the all over pain is up and I’m doing what I can.  Here’s a list of things I’m waiting on because, holy crap, my life is literally just me waiting:

  • 3 months to see my rheumatologist to see if she even wants to treat my fibromyalgia
  • humira to kick in
  • whether or not to actually get surgery because of too many factors
  • my doctor to reply to my message from last Monday because work wants me to get vaccinations all the damn time and I can’t just do it like a normal person
  • winter to GTFO because cold weather makes everything worse
  • depression to GTFO because it’s a bitch

I could make this longer, but I realize people have lives.

So that’s it. (JK, I could go on forever.) Apologies for the vague bit, I know I usually don’t withhold anything, but that one is a bit personal.  I am planning on making another post soon talking about my forever struggle of work and health, so hopefully I won’t be a terrible person and actually get that posted here in the next few days or so.

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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.

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.