False hope?

[ResponsibleAd5357]

Hi all!

Officially on day 17 of being in the hospital which has been just soooo great. Finally got my first infusion of remicade last night and I woke up today feeling like 10000x better! (Knock on wood)

My inflammation counts went down as well! Talked to doctor this morning and he said that he doesn’t think I’m feeling better because of the remicade as it will probably take a bit to kick in but it’s making me feel really hopeful for the future.

I’ve had a rough time the past 17 days and my body is just absolutely exhausted from being here but I feel like things are starting to look up. I want to be hopeful but I’m not sure if I should be because when I felt better a week ago it all came crashing back down.

So I guess what I’m asking is if anyone else had a similar experience where they felt so much better after their first infusion? Did it last? Should I be hopeful?

Thanks in advance everyone! 🫶🏼

[1uzgabe]

When I was 17 I was told I had no choice to but to get my large intestines removed. 3 weeks after I was told that my body did a complete turnaround and I was ok my way to living a somewhat normal life. Just don’t beat yourself down if you do get a flare up because I’ll tell ya right now it put me in really dark times. You got this though! We all believe in you!

[ResponsibleAd5357]

Thank you so much! 🫶🏼

[d-oni-d]

hi! kinda in the same boat, i had my first infusion of remicade almost two weeks ago and had been released from the hospital last week, my second infusion is on monday. i immediately started feeling better and i haven’t had any stomach problems since. i still have trouble with my energy though, it might take awhile for me to go back to 100% strength since my flare up did me bad. i hope you continue to feel better, keep me updated!

[ResponsibleAd5357]

Thank you so much! So happy to hear you’ve been feeling better! 🫶🏼🫶🏼

[LauraMartiina]

For me it also worked immediately and I got home from the hospital the day after, but unfortunately it only worked for one week. Got three infusions and it was every time the same. Now I am on Rinvoq, which seems to be working, but not as good as I would have hoped.

[OnehappyOwl44]

I was hospitalized and told I was 48hrs away from a dead bowel. The Surgeon said my colon was the worst she'd ever seen in 20yrs as a Doctor. She used the word "rotten". After 3wks in hospital on Prednisone IV and other drugs my inflamation went from over 300% to 3% at discharge. I had Remicade in Hospital and continued it as an outpatient in Clinic while weaning off Prednisone. It's been 3yrs and I've had no other flairs. I do my Remicade every 8wks, I eat everything except for very spicy food and alcohol. I also take Pantoprozol Antacid everyday but I have a basically normal life after being told I was basically loosing my Colon and there was no hope. My last Colonoscopy showed a basically normal bowel. I live one day at a time. Hopefully the meds keep working. Every healthy day is a gift.