Before I speak about my experience there’s a little update to talk about first. I may have mentioned before that a few months ago I was informed that my Humira medication for my Crohn’s treatment was no longer going to work. After a blood test, we found out that I have developed antibodies against the medication, meaning that this was no longer going to work for me. This was stressful and disappointing news, but hope was not lost as there are still other medications that I can try. The next one that my gastro put me on is a medication called Remicade. Like Humira, Remicade is a TNF blocker. In short terms, this stops my immune system from attacking my own body, but in return, I have a weaker immune system and am more susceptible to infections and getting sick. But if this means having fewer symptoms and better health days then I’m fine with that as I am already a cautious person when it comes to public hygiene.
The point of this post is to document and share my experience with the medication so anyone going through similar things can know what to expect when it comes to the infusion process. I’ve never had an infusion before so I was definitely nervous, but the idea of sharing the experience made it a little easier so let me walk you through what happened at my first appointment:
I arrived at my local hospital around 10:15 on Nov 23rd since my appointment time was 10:30 am. I found my way to the infusion center and I checked in at the front desk then got sent back into a big open room that was lined with reclining chairs each with an IV pump. There were plenty of other people there as well so there wasn’t a ton of privacy, but everyone minded their own business so there wasn’t a huge issue being around so many other patients. I was seated and soon given an IV by a nurse. They started me off with a small bag of fluids (I think just a normal saline solution used for dehydration) and a few oral pills and steroids. These were given to help prevent an allergic reaction in case I happened to get one. I was given Benadryl, Tylenol, and steroids, but not sure which one specifically. After waiting for those to kick in they started administering the Remicade. My dosage was based on my weight so it was smaller than the average person would have gotten (I’m tiny). It went slow at first just to make sure that I was taking it okay, then over the next hour upped the intake speed on the IV pump. I didn’t experience any reactions other than drowsiness from the Benadryl, so the process wasn’t bad.
The only uncomfortable part was the fact that I had to have the IV in my inner elbow area instead of my hand because I have small veins, but that’s a me problem and most people should have no issues with IV placement. Because mine was in the inner elbow, I couldn’t bend my arm and had to keep it straight, so that made it difficult to hold a book open or write (I’m left-handed and the IV was in my left arm). Also, I ended up being seated underneath the only TV in the room and the volume was so loud I couldn’t hear my own videos even with earbuds in, so everything I brought with me to occupy my time ended up being pointless. The whole event went on for about two and a half hours, but my next appointments shouldn’t be as long as that (at least that's what I was told). Luckily they do provide pillows and a blanket so I pretty much ended up playing on my phone and napping on and off thanks to the Benadryl. I waited till the IV pump was done with the medication and then they gave me one more small bag of normal fluids to help clean out the IV then once that was finished they took out the IV and I was bandaged up and free to go home.
Now that it's a day later I can’t say that I feel any effect from the medication so it’s going to take some time to feel any kind of process with my Crohn’s but I’m hopeful. The nurse that I spoke to said that those who didn’t have Humira work for them had Remicade work very well so I hope that this is a better treatment for me but only time will tell. Now that I’ve done the first treatment, the next ones will be in 2 weeks, 6 weeks, then regularly every 8 weeks, but the dosage should be even smaller than what I started off with. Unfortunately, my next appointment is actually on my birthday (Dec 7th), so I’m not looking forward to doing it on that day but all my birthday plans are happening the weekend before and after my birthday so I don’t see a point in rescheduling it. I will be doing updates every infusion appointment on my Fanhouse but won’t be doing an update here till I’ve started to see some kind of progress or know if it won’t work for me.
Thanks for reading and I hope this was informative for some of you. If anyone has any questions about the medication, process, or Crohn’s Disease itself please feel free to ask there are plenty of ways to contact me! I’ll see you in my next post Babes, take care.
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