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Neurological side effects of biologic medication

I am looking for stories that the white papers don't tell, that stay between you and your doctor and never get reported. Comment of you have been on #Biologics and experienced neurological symptoms especially new chronic life-changing nerve pain.

1. Which biologic?
2. Related to COVID infection or no?
3. Did you stop taking it?
4. Did the side effect symptoms go away, if so?

I read something about the immune system being like a water bed. Nothing ever gets fully blocked, just displaced.

I am on #Stelara 90mg/4wks. I am concerned that my typical gastrointestinal inflammation just got redirected to neurological problems like neuropathy, autonomic dysregulation, weakness, fatigue and dizziness that made my life even harder than the Crohns did. I have been doing a lot of research and am asking my doctor if we can switch me off of it.

I was on Stelara about 8 months til I got COVID and its been downhill ever since. Went from teaching dance classes to walking with a cane in about a year.

Its hard to find this kind of story online. Maybe the comments on this post will help some confused people who are also having the same symptoms with #immunosuppressants -- hope we all feel better soon.

Also, I'm new to this app. Help me find my people! Say hi!

#AutoimmuneDisease #remicade #Humira #cimzia #rinvoq #anythingumab #RheumatoidArthritis #Psoriasis #PsoriaticArthritis #InflammatoryBowelDiseaseIBD #longcovid #ChronicFatigue #Neuropathy

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I Nearly Died Last Year and Now I Have To Do The Same Thing On The Same DayA Year Later-So Anxious!

Last year on May 19, 2022 I went in for my routine Remicade infusion and bloodwork. I had been told my liver enzymes were a little elevated but nothing that they felt I needed special medication or a new specialist added to my team. The day after my infusion I felt really bad, but I thought it was because I was a having a really stressful time at work. I woke up on Saturday morning with pain at the bottom of my sternum. I thought it was heartburn so I took some medicine, it didn’t work. I started having trouble breathing so I used my inhaler which helped with my breathing. Later in the evening I had to use my heartburn meds again. I started checking myself for heart attack symptoms-none, but the pain increased. I eventually got to the point of tears I was in so much pain. My fiancé (now husband) was cooking supper when he came in the living room and saw me crying he dropped everything and took me to the hospital. I was in liver failure with enzymes near 1,000. (If you’re unfamiliar with what’s normal it’s 50-55.) The next week I was in the hospital but don’t remember a lot. Over the next couple months I had tons of blood draws, scans, and a biopsy. I was told if I didn’t have a transplant I was going to die. I was diagnosed with Autoimmune Hepatitis. It was an emotionally and physically draining summer and then I started back to teaching the best I could with enzymes that started going down for no reason. I stopped Remicade and started Rituxan in November. This coming Thursday I have my next Rituxan infusion which will exactly one year from when the nightmare started. I start crying when I think about going for my infusion. I’m so scared about getting it. I know my enzymes are ok but I can’t stop feeling anxious about it.
I know I’m going to be ok. I just needed to vent about it. Thank you for reading this far. #AutoimmuneHepatitis #RheumatoidArthritis #Lupus #ComplexRegionalPainSyndrome #chronicmigraine #remicade #rituxan #Fibromyalgia #ChronicIllness #ChronicPain #Anxiety

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I'm newly on remicade. Had 2 infusions so far which have done nothing for me. Still have bad uc symptoms. When did it start working for you?


1 comment

remicade and it’s many side effects

ugh i typed it up perfectly and then disappeared.

anyway, i don’t know how to explain it and i’d rather not check dr google.

do any remicade recipients get a sensation that’s almost prickly inside the chest somewhere between the lungs and stomach area? almost like pins and needles but more just generally prickly.

also, feel free to gripe about side effects in the responses. they’re hard to deal with and
¯\_(ツ)_/¯ normies just don’t understand.
also please, if you feel like sharing, if you have any info or experience receiving the covid vaccines. i’m still undecided but leaning more towards i should probably get it. but no i’m too scared. i know normies that have experienced some rough side effects from the vaccine(s)

i appreciate you. 🤟🏻

#remicade #SideEffects #CrohnsDisease #infliximab #Biologics


Has anyone ever had severe muscle aches and pain in their body, along with shakiness and nausea after a remicade infusion. I just got one on 4/30/20?

#UlcerativeColitis #InflammatoryBowelDiseaseIBD #remicade #chronicjointpain #ChronicPain


Is this a reaction from my Remicade infusion?

I went for my 6 week infusion- 8 weeks was no longer working for me. This time the infusion seemed to go smoother than the last. I came home and took a nap, when I woke up my legs felt like they were aching. I called the Dr they said maybe dehydrated and to pump as much fluids as I can. They didn’t think it was related to the infusion. However I do. I have never felt this before. What else can it be? Day 2 and my legs are still aching. Anyone else experience this on Remicade? #UlcerativeColitis #ChronicPain #ChronicIllness #Anxiety #remicade

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Hope #rhumatiodarthritis #Pain #remicade

Had my first dose of Remicade yesterday. I truly hope this will bring some relief in the months to come.

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