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STELARA nausea weakness

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Posted 10/17/2023 1:53 AM (GMT 0)
Hello there,

Iam still on 10 mg pred (via enema) and 15 mg Rinvoq and I had my first Stelara infusion yesterday. The infusion itself went smoothly. However about 6 hours afterwards I felt this terrible nausea and fatigue set in. I then felt cold and started shivering. Like almost violently shivering.

I called the ambulance. They ran an ECG, checked vitals (oxygen, temp, BGL, BP) and aside from the HR being 110 BPM and temp being slightly on edge (37.1 C) I was ok. The HR later came down to the 80s.

Today I still feel nauseous and it seems Iam also constipated.
I still feel week and like I can't focus. I just want to lie down.

Any one else had similar symptoms after Stelara?
If yes, how long do these side effects last?
Iam not looking forward to the injection in 8 weeks.
Posted 10/17/2023 2:15 AM (GMT 0)
Sorry this happened. Seems rather extreme! Perhaps anti histamines/ prednisone for pre meds. I had some bad days in the early months buts it’s pretty mild now. It attacked my joints and gave me awful yeast infections along with weakness & nausea. Now I just have occasional weakness & nausea np ut I always have zofran nearby.

Hope things calm down.
Posted 10/17/2023 4:30 PM (GMT 0)
It sounds like you had a reaction. My thoughts are like U B Tough, you should try pre-meds before the next injection is done. I would try this before kicking it to the curb.

Let us know what your dr says. Sorry this happened.
Posted 10/21/2023 9:20 AM (GMT 0)
Thanks for the replies smile

U B Tough: great name by the way. Iam sorry you suffered side effects from Stelara. It's always hard when a med causes side effects because you have to balance them with being sick with UC and figure out which is worse. Usually UC wins hands down, so we suck it up and keep taking the med.
Iam glad that these side effects settled with time and you have found a way to deal with them. I was already on pred at the time so maybe next time I'll add some antihistamines.

straydog: I called the doc's office and spoke with the nurse. She said that since this was the first dose, and as it is a much higher dose than the (maintenance) injections, that I should just see how I go at dose #2 in 8 weeks. Oh I should also mention: other than the fast HR and slightly high temp, my BP came up low at the time when this happened. Like hypotension low.

Post Edited (Conquer UC) : 10/21/2023 1:24:25 AM (GMT-8)

Posted 10/22/2023 1:08 PM (GMT 0)
Hey girl. Was thinking about you and wanted to see if are you feeling any better? Did the reaction die down?
Posted 10/22/2023 10:11 PM (GMT 0)
Yikes. I'm sorry you had this happen.

I know I'm on a different medication, (Remicade) but sometimes I react like that. I keep benedryl and Zofran close by for the first 48 hours after my infusion--and I usually use the Benadryl every 6 to 8 hours the first 24 hours after my infusion.

I hope you feel better now and that the next time it doesn't affect you like this.

Clo
Posted 10/27/2023 5:57 AM (GMT 0)
Thanks Clo for the suggestions. I'll definitely do something similar for the injections.

Thanks Joanna for the check-up. Things got better and it seemed to to have only occurred on the day of the infusion.

However Iam having trouble now with my flareup worsening. Iam not responding to pred enemas anymore. Infact they seem to be making me worse even? As in more bleeding somehow?

I have no idea what to do. Today I also started Entocort. I cannot take oral pred because I basically go crazy. I become an anxious manic insomniac. I want to avoid that crap as much as possible.

It has been 11 days since my first Stelara infusion. Shouldn't I be starting to feel better by now? *cry*
Or atleast shouldn't I be stable? Symptoms aren't even at the same level as when I first took the infusion, symptoms are getting worse! How is that even possible??

Cancelled trip, dashed hopes, broken plans. This disease is "emotional damage" and the mental toll is takes on us is staggering.
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