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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

22 reactions 9 comments

Increasing anxiety due to covid- do you feel the same?

The last couple of weeks I've found my anxiety is increasing and I think I know why. (Background: both myself and my bf are immune suppressed, he was shielding, and we've both had all the covid vaccines we can)

Here in the UK restrictions are being lifted more and more. For example for a couple of weeks now there is no legal requirement to self isolate. Yes that's no legal requirement to self isolate even if you test positive for covid 🤦‍♀️ And as of 1st April you won't be able to get free covid tests either. In fact I think the only people who can get free covid tests are those going into hospital and those who are vulnerable to covid and showing symptoms. It's completely crazy imo, but you know there's nothing I can do.

So the message I'm getting from the government is "go back to normal". This in itself increased my anxiety. Another layer to add to this is the messages I'm getting from work, social media and people in general is "let's do more, see more people, return to the office, etc." This is feeding my anxiety because my brain is going "it's not safe out there because covid and people are acting like covids over... to your fight, flight and freeze battle stations... ***PANIC***"

I really don't know what I can do to handle this anxiety because practically speaking there isn't anything more I can actually do. I already work from home and thankfully can continue to do so (the message to return to the office is from top level management. My team however are super understanding and supportive!). We already get food shopping delivered and clean it on arrival. I don't see anyone inside with one carefully considered exception: I sometimes have private trampoline sessions in a big hall with only the coach in a mask there, and they're irregular. My parents have a 2 week extra-precautions period prior to seeing me.

There is literally nothing else I can do to keep myself safe and ease my anxiety. I suppose all I can do is wait it out and wait for my brain to get used to the new restrictions or lack thereof.

Is anyone feeling similar?

#COVID19 #ChronicIllness #ChronicPain #Arthritis #AnkylosingSpondylitis #IrritableBowelSyndromeIBS #Migraine #RheumatoidArthritis #PsoriaticArthritis #JuvenileIdiopathicArthritis #ImmuneSystem #ImmuneDeficiency #Biologics


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


Transplant meds and the COVID vaccine? #COVID19 #Vaccine

Anyone on an anti rejection drug (Aziothioprine, methotrexate, newer ones?) and heard if they will/won’t be able to get the COVID vaccine?
There doesn’t seem to have been any testing done in our population yet... (though I’ve been told that people with autoimmune diseases who are only on biologics like Remicade/Stelara etc. will be getting it) #Transplant #Biologics #COVID19 #Vaccine #Vaccines #Methotrexate


Nucala and Anaphylaxis

Does anyone else take Nucala to control their asthma? I've been taken ng it successfully for years and sometimes it felt like it was the only thing really keeping me breathing. On Christmas Eve I had an anaphylactic and hypoxic reaction after receiving my injection. I'm so grateful to the nurses who responded quickly during my observation period, but I'm so scared about not being able to take it anymore. Has anyone else had a reaction like this and beeen able to continue Taking it or are there athoer biologics out there for eosinophilic asthma?

#Asthma #Nucala #Anaphylaxis #Hypoxia #Biologics

1 comment

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.



so I haven’t had any success with Humira and my doc wants to try Cimzia. has anyone had any experience with this medication? helpful or not helpful? #RheumatoidArthritis #Biologics


Does anyone on here been diagnosed with seronegative spondyloarthropathy?

I would love to hear from you if you have and any tips you may have for dealing with it! Thanks!!☺️

My rheumatologist is treating me as if I have RA & ankylosing spondylitis (methotrexate and Simponi Aria infusions), but didn’t want to formally diagnose me with either because I’m seronegative.

#ChronicIllness #ChronicPain #Seronegativespondyloarthropathy #spondylitis #spondyloarthropathy #AnkylosingSpondylitis #SeronegativeRA #Pain #Advice #Spoonie #seronegative #Methotrexate #BackPain #simponiaria #Biologics


Do you worry when getting a fever? #Methotrexate #RheumatoidArthritis #Biologics #autoimmune

Currently it's late at night and I've been feeling extrodinary crappy the last week. Got a prescription for antibiotics last week but the fever is still above "danger" zone. I've been pulling off going to the doctor because I get brushed off so many times, and I am actually on quite strong antibiotics. I now worry about everything it can be, knowing some lethal outcomes are possible. And side effects of my medicines. Tomorrow morning I'm going for sure! But I still have the night ahead and I actually am scared of suddenly dying or not waking up. Does anyone else experience this?