Stelara

Join the Conversation on
14 people
0 stories
2 posts
Explore Our Newsletters
What's New in
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

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

22 reactions 9 comments
Post

Help! #CrohnsDisease #Stelara #Biologics #Prescriptions #prescriptioncost #IBDAwareness #InflammatoryBowelDiseaseIBD #ChronicIllness #AutoimmuneDisease

I went to order my monthly Stelara yesterday and was told it was going to cost $716! I had a copay card, but I guess it doesn't have enough money left to pay for it. I was also told I can't get a new one from Janssen Carepath. Here's the real kicker- My copay card still has $1000 left on it for this month. So next month, I'll owe about $1700! For one shot. My family doesn't qualify for a lot of other medication assistance because we are above the threshold. It really sucks though, because we still can't afford $1700 a month. It's completely unsustainable. This medication works really well for me too. So I really don't want to change it. Can anyone recommend other cost assistance programs for Stelara? We're really struggling to find something.

5 comments