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Will I forever be anxious over infusions?

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Ulcerative Colitis
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Posted 4/5/2022 3:33 PM (GMT -8)
So I have my 6th Inflectra infusion tomorrow, and my first at the new 4 week schedule. Feeling really good and normal, no symptoms at all right now.

However, I’m still so anxious over getting infusions! I’ve said on here before I’m anxious of having an infusion reaction. I thought was getting over this at the last infusion. One of the nurses asked me why I’ve been so anxious and I let her know I'm afraid of infusion reactions. She then tells me “well I’m not trying to scare you but it does happen” ……… fear returned
Now this was her last day at the infusion center so maybe she was just saying whatever because she didn’t care since she was leaving (she was also openly complaining about the management there so she seemed bitter) but she definitely renewed my fear. Ugh. Just trying to hard to get over this fear. I just want to have an infusion that I’m not dreading.
Posted 4/5/2022 5:13 PM (GMT -8)
I sorta look forward to the infusions now. I do them on Thursday morning so I take the morning off work. I take along a book, kick back and relax in a heated recliner that massages. Sometimes I take a little nap (depends on how good the book is lol). I tried taking my laptop and working, but my blood pressure was high when they checked it so now I just relax.

If a bad reaction happens it's gonna happen whether you worry about it or not. I choose not to worry. smile
Posted 4/5/2022 5:15 PM (GMT -8)
oh ... and that nurse was an a--
Posted 4/5/2022 5:25 PM (GMT -8)
Yeah that totally makes sense about not worrying because if it’s gonna happen then it’s gonna happen. I wish I could not worry but my mind just runs away and gets the best of me. I do get calmed down once I’m about 30 mins into the infusion. The anticipation is just the worst. I hope I can look forward to it one day too.

And I also agree about the nurse haha I was feeling a little better about them and she kinda ruined it for me
Posted 4/5/2022 6:40 PM (GMT -8)
HaleyA,

I completely understand. I have been on Remicade since 2015 and my blood pressure is still high for the first 45 minutes of the infusion. Well it used to be high whenever I didn't take premeds. Now I take Benedryl and it knocks me out.

I was always looking for some big sign that I was having a reaction. My sign was clearing my throat alot... At the very beginning of the infusion. My nurse came in 3 times to ask if I was ok. She finally just came in and stopped the infusion, told me that was a reaction and we were doing the premeds right then. Then she sat with me for 45 minutes to make sure I was ok. Started the infusion again and I was fine. When I got home I took 2 benedryl and went to bed.

The staff where you go to get your infusions are always looking for reactions and are equipped for so many situations.

I don't have an answer. I can only commemorate. It's amazing how strong warriors are... How many fears we face in a daily basis and yet we reach deep within ourselves to conquer them.

You HaleyA...you are a warrior.

Clo
Posted 4/6/2022 3:07 AM (GMT -8)
I also don’t mind the infusions! I bring all kinds of things to keep myself busy. They have snacks and drinks. The 3 hours goes pretty fast. I also get premeds that help a lot. La la land for me!
Posted 4/6/2022 4:10 AM (GMT -8)
Clo: thank you for the kind words!

Faithmac: I bring my iPad with me but I’m always too nervous to actually pay attention to whatever I’m trying to watch.
For premeds they give me Zyrtec and Tylenol. So those don’t really make me too sleepy. I wish they did haha
Posted 4/6/2022 11:44 AM (GMT -8)
Having the right nurse makes a WORLD of difference. New nurse today since the other one is gone. Oh my gosh she made me feel so comfortable and at ease when I told her my concerns. She was so kind and understanding. I felt at ease so much quicker this infusion. Such a good experience today
Posted 4/6/2022 3:21 PM (GMT -8)
Oh good, Haley! I’m glad it went well today. And that you’re feeling better (must be working!) 😀. And yes, the anxiety does go away! Maybe a little teeny bit now and then — more like a stray thought that is quickly forgotten!
Posted 4/6/2022 3:43 PM (GMT -8)
Yes definitely working. Haven’t seen any symptoms in a little over a month now. And now that I’ve started on my 4 week infusion schedule I hope it stays this way 😊
Posted 4/7/2022 3:00 AM (GMT -8)
That's good news, Haley! Glad this is working for you!! Nice to feel like you have a life that doesn't revolve around the toilet, isn't it? Think of the infusions as your magic elixir smile
Posted 4/7/2022 4:09 AM (GMT -8)
Haley,

I am glad this nurse and the infusion was so much better! Getting your disease under control, feeling better and not thinking about going to the bathroom is such a relief.

That other nurse....well...just glad she isn't there anymore. The infusion center nurses are usually pretty good but every once in awhile a bad one sneaks in.

And having the trusted nurse there will help so much...just seeing her there will calm you if you get nervous. It's the trust factor.

Clo
Posted 4/7/2022 6:09 AM (GMT -8)
Yes she was great. She even told me what she would do if a reaction were to happen and stayed close by until I was more relaxed.
As much as I’ve been anxious and disliked getting the infusions they have changed my life for the better. I was in a horrible flare this time last year and it lasted for such a long time. I’m feeling the best I have since before diagnosed which was almost 3 years ago.
Posted 4/7/2022 9:29 AM (GMT -8)
That’s great news to hear! So glad the infusions are working for you. And bravo for the nurse. She sounds like a jewel.
Posted 4/8/2022 5:15 AM (GMT -8)
When I got remicade they gave me benadryl and prednisone to prevent a reaction and kept me there for a long enough time to see if I'd get a reaction. OK that was more than a decade ago but don't they still watch you and give you stuff to prevent a reaction?
Posted 4/8/2022 7:01 AM (GMT -8)
They give me Zyrtec and Tylenol before the infusion. They take my blood pressure several times during. They don’t have me stay afterwards
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