Happy #HumiraDay #3

Yesterday was a bit of  a frustrating Humira day because I was supposed to take my dose last Friday…

My initial delivery from Healthcare at home was due when the weather was pretty grim so can understand why they postponed the delivery.  I rescheduled to a day last week when unfortunately I was running late to work due to my Crohn’s symptoms and wouldn’t have got to the office (where my delivery was scheduled) in time so asked for it to be booked for last Friday when I knew for sure I was working at home.  I didn’t get the normal text reminder so phoned on Friday and they had no record of it being scheduled for that day.  *sigh*. Anyhoot, it got scheduled AGAIN for yesterday and I finally got my Humira!

Anyone else have this much fun with Healthcare at Home?

So I’m 5 days late taking my shot.  I take it every 2 weeks.  I absolutely would not and will not condone being late taking any medications BUT with Humira, I’m no so worried about being a few days out on scheduled doses.  It’s something that builds up in your system so the odd day here or there when something like my situation happens is not the end of the world (but stick to your scheduled doses for things, ESPECIALLY steroids!!!!!).  But generally, folks – take meds when you’re supposed to!

The Good

  • I got a referral for Entyvio!!!!!!!!!!!  After being rejected for weekly shots of Humira (which has always seemed to work for me on the 3 month prescription), my gastro doc just went ahead and applied for infusions.
  • I worked with the HR team at work to get a parking permit. Parking for work has been a big issue because our main parking site was closed and the new site doesn’t open until April. The extremely limited parking spaces were allocated by department and then by seniority.  Originally I had a space to use on Thursdays but had to get to the office via public transport Mon-Weds and then work from home on Friday.  I struggle massively with the public transport option to get to the office (15 minutes of a train with no toilet followed by a 20 minute walk through a residential area with no toilets!). The parking permit means I can leave the house when I feel ready (no added stress of having to be at the station at a very specific time), can stop if and when I need to on my journey by car and generally make me feel more confident with the journey!

The Bad

  • Currently on 20mg Prednisone which worked for the first week and a half but had some flare-y issues over the last couple of days (reducing to 15mg today).  Also feel like I’m on the verge of a cold or whatever but am trying to kick it in the arse so I’m in a good place for my first Entyvio infusion (although that just got cancelled and rescheduled…)

Fun Stuff

  • I’ve always been a bit of a Sim City fan so imagine my delight when I found it in app form! It has the usual building of your city but also has “mayor challenges” where you have to complete tasks and a war game that you and your team mates build items to use to attack other teams.

Things I’ve Learnt

  • Crohn’s and Colitis UK have a closed Facebook forum! I just joined yesterday and have had a nose around and looks like everyone in there is actively posting about all things Crohn’s and Colitis so really chuffed about having another place to connect with fellow IBD-ers! Search “Crohn’s and Colitis UK forum” on Facebook to join and come and say hiya to me if you do!

How’s your last two weeks been? Let me know!

2 thoughts on “Happy #HumiraDay #3

  1. Ah, I wish Crohn’s and Colitis UK had a forum that wasn’t on facebook! Last two weeks have been okay for me, finally getting my energy levels back up – slowly but surely.

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    1. I think there are other Crohn’s forums out there (pretty sure some have come up when I’ve been googling symptoms). Glad to hear you’re re-charging – don’t push yourself too much!

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