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Posted 2/11/2022 4:18 AM (GMT -8)
My infusion is Monday. I’ve had no pathology from my Gi. I’m so nervous I feel like crying constantly. Im scared I’ll get shingles or something. I just keep thinking the worst
Posted 2/11/2022 4:37 AM (GMT -8)
What do you mean by pathology from your GI?

Infusions aren't a big deal. Are you getting Entyvio? That's only a 30 minute infusion. Piece of cake smile

Try to stop worrying so much ... you will drive yourself crazy.
Posted 2/11/2022 7:29 AM (GMT -8)
The prednisone probably is contributing to your anxiety. The only drug with an increased risk of shingles we take is Xeljanz. Try to do something relaxing, a hot bath, word puzzles, paced breathing exercises, anything to help you calm down a little each day if you can.
Posted 2/11/2022 8:43 AM (GMT -8)
In fairness you could get shingles at any time, with or without medication- sorry that's probably not helpful ....

I think you will be fine. Your first Entyvio infusion will probably be longer than 30 minutes (i think mine was 2 hours) so they can monitor your response. Just take a good book.
Posted 2/11/2022 9:21 AM (GMT -8)
“Yes, my friends, that is too true. I have been surrounded by troubles all my life long, but there is a curious thing about them—nine-tenths of them never happened.”

An interesting read…

https://quoteinvestigator.com/2013/10/04/never-happened/
Posted 2/11/2022 10:52 AM (GMT -8)
My first infusion was 30 minutes. You will be fine. I was nervous as heck too on my first. It’s normal! Tell your nurse you’re nervous. I find that helps me not feel so self conscious about being nervous.

You can call and sk if your dr has ordered pre-meds. If he hasn’t you can take a Benadryl or antihistamine at home before you go — if you’re anxious about a reaction. For the record I refuse pre-meds and have never had an issue of any kind.
Posted 2/11/2022 3:56 PM (GMT -8)
As my old GI would tell me at every appointment when I was going through all the biologics one by one and none of them was working: You're going to be okay.
Posted 2/11/2022 6:47 PM (GMT -8)
Thanks so much everyone! Your support means a lot. It’s a tremendous help. Down to 5mg prednisone. I will take my last on the Wednesday after my infusion. The Prednisone as well as Menopause confirmed on Tuesday with my blood tests, on top of this flare and infusion has been more than I can mentally deal with at once.
Posted 2/11/2022 6:47 PM (GMT -8)

island time said...
“Yes, my friends, that is too true. I have been surrounded by troubles all my life long, but there is a curious thing about them—nine-tenths of them never happened.”

An interesting read…

https://quoteinvestigator.com/2013/10/04/never-happened/


Thankyou
Posted 2/11/2022 6:53 PM (GMT -8)

CCinPA said...
What do you mean by pathology from your GI?

Infusions aren't a big deal. Are you getting Entyvio? That's only a 30 minute infusion. Piece of cake smile

Try to stop worrying so much ... you will drive yourself crazy.


I’m definitely making life hard for myself worrying. Learning how to control it will be something I do when I feel I’m through the worst. Yes entyvio. They said 30min and an hour wait afterwards
Posted 2/11/2022 6:55 PM (GMT -8)

Sara14 said...
As my old GI would tell me at every appointment when I was going through all the biologics one by one and none of them was working: You're going to be okay.


I wish mine was as reassuring. I will be changing again! I need a Gi who is supporting not only for my IBD but my mental health as well.
Posted 2/11/2022 6:59 PM (GMT -8)

FlowersGal said...
My first infusion was 30 minutes. You will be fine. I was nervous as heck too on my first. It’s normal! Tell your nurse you’re nervous. I find that helps me not feel so self conscious about being nervous.

You can call and sk if your dr has ordered pre-meds. If he hasn’t you can take a Benadryl or antihistamine at home before you go — if you’re anxious about a reaction. For the record I refuse pre-meds and have never had an issue of any kind.


Thanks FlowerGal. By pre meds do you mean relaxants?
Posted 2/12/2022 10:59 AM (GMT -8)
Yeah, he did some other questionable things but it was really nice that he reassured me that way.
Posted 2/12/2022 2:42 PM (GMT -8)
No. Pre-meds are different dr to dr. The GI I had when I started entyvio said he wouldn’t order any — wait and see if I needed them and I was fine. My current GI orders a mild steroid and an antihistamine— but I refuse them because I don’t need them.

I think I took a Xanax before my first infusion to calm me down. 😉
Posted 2/12/2022 2:48 PM (GMT -8)
I was VERY nervous before my first infusion and for my loading doses so I understand how you feel. People on this forum made me feel a lot more at ease since most of them have been through it before.
Posted 2/13/2022 3:28 AM (GMT -8)

FlowersGal said...
No. Pre-meds are different dr to dr. The GI I had when I started entyvio said he wouldn’t order any — wait and see if I needed them and I was fine. My current GI orders a mild steroid and an antihistamine— but I refuse them because I don’t need them.

I think I took a Xanax before my first infusion to calm me down. 😉


FlowerGal does being in entyvio mean we will die if we get a bacterial infection. I get sinus infections a lot

Post Edited (Theanxiousaries) : 2/13/2022 5:53:07 AM (GMT-7)

Posted 2/13/2022 3:47 AM (GMT -8)
No it does not smile It means you're more likely to need antibiotics

But even that is not definite. I've had a couple of skin infections recently and they resolved on their own without antibiotics.
Posted 2/13/2022 4:54 AM (GMT -8)

poopydoop said...
No it does not smile It means you're more likely to need antibiotics

But even that is not definite. I've had a couple of skin infections recently and they resolved on their own without antibiotics.


Poopydoop are you on entyvio? I’m awake stressing. My infusion is 9am. So many thoughts in my head. So nervous
Posted 2/13/2022 5:15 AM (GMT -8)
Not now but I have been in the past. Right now I'm on xeljanz and prolia (osteoporosis drug), both of which can increase the risk of various infections.

Entyvio acts mostly on the digestive tract and a little bit on the respiratory tract. There's a small increased risk of certain infections but in all probability you won't notice any difference. I know it's scary (been there). You'll be fine. It's a lot safer than prednisone or azathioprine which you've been on before.
Posted 2/13/2022 6:33 AM (GMT -8)
TAA, Entyvio is not systemic like the other biologics, it targets the colon unlike the others. You will do fine. Keep in mind drug company's are required by law to state potential side effects.

Be sure to drink plenty of water so that you are well hydrated for your quick infusion.
Posted 2/13/2022 8:12 AM (GMT -8)
For the record — I never had a lot of sinus infections before entyvio but I did have a lot of colds. Haven’t had a one in the 5 years since so in my case it seems to have helped.

Let us know how your infusion goes!!!!
Posted 2/14/2022 12:11 AM (GMT -8)
I had my infusion today. I was out by 130. So far it went well. I’ve just done a lot of crying. I was so scared I made myself sick. I suffered more than I had too. I’m tired of it. I’m tired of living in fear. Emotionally I’m drained and have slept since I got home. I feel I’m set up for a life time of worry and I feel like giving up. I’m just so sick of being scared.
Posted 2/14/2022 1:11 AM (GMT -8)
You did it! You had agency and did what you need to, to heal your colitis. Now it's just a question of patience to see how well it works.
Posted 2/14/2022 2:48 AM (GMT -8)
I pray it’s the beginning of the end of this horrible flare. I want to recover and focus on learning how to build strength of mind so I can deal with difficult situations. I’ve already started to learn mindfulness. Maybe some meditation and yoga. This has been a terrible time in my life but it’s definitely taught me a lot. I just want the chance to enjoy the simplest things now.
Posted 2/14/2022 7:14 AM (GMT -8)

Theanxiousaries said...
I had my infusion today. I was out by 130. So far it went well. I’ve just done a lot of crying. I was so scared I made myself sick. I suffered more than I had too. I’m tired of it. I’m tired of living in fear. Emotionally I’m drained and have slept since I got home. I feel I’m set up for a life time of worry and I feel like giving up. I’m just so sick of being scared.

You have made the big first step. Good for you. Hope all goes well and each infusion gets easier. Keep us posted on your progress.
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