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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