Advice on possible Lupus from remicade?

[brfitzp]

So I started Remicade back in May of this year and It's been going really well, no side effects that i could tell, bowel issues have been almost completely resolved.
however about two weeks ago i got a cold or allergies, something and around the same time i started having odd pains.

These pains are in my hands, forearms, shoulder, shoulder blade, lower back. almost as if someone punched me in that spot.

The pains aren't unbarable but fairly uncomfortable. They come and go at any time, and each day it seems like a different place is aching. At first I thought it was my workouts but i took a week off when i was sick and was having pains even after that.

Today i got frustrated and starting googling and came across a thread here and there were a lot of people saying they had to stop the remicade because of lupus.

My last infusion was in mid september so i'm due for one soon.

Is this something that I should call my doctors emergency line for right now?
Or can it wait until monday?

What happens now? my miracle treatment is failing on me

 

[nogutsnoglory]

I'm sorry you are experiencing these symptoms. Since you said it was uncomfortable but not unbearable it probably is best to not call the emergency line. You want to reserve those calls for when som is really awful and can't wait.

Definitely discuss it on Monday and certainly before your next infusion. They may want to switch you to another drug if they deem this as causing these symptoms.

 

[brfitzp]

Ok thanks for the advice. I've read through some pretty unforunate side effects on here. And a lot of the people who were told they developed lupus seem to fit my symthoms almost exactly. So i'm quite sure that's what's happening. I hope my doctor considers it as it seems a lot of people's GI doctor said that lupus wasnt the case.

I hope this just goes away by stopping the remicade and I don't have anything long term :\, I'm only 22.

 

[nogutsnoglory]

I hope it does go away if it is found to be drug induced lupus. Keep us posted.

 

[ThanksP]

I get bouts of drug induced Lupus. But because the symptoms are bearable, I have continued the Remicade. Stopping Remicade would be entirely worse than the annoying pains, foggy brain, etc.

Hope you feel better soon!

 

[Nickaz]

Hello Brfitzp I started remicade (for UC) in April. With my last 3 infusions for the 3 weeks after my infusions I have been experiencing chronic fatigue, my muscles ache and my joints ache particularly in my fingers, toes and knees. On Friday my GI said it could be drug induced lupus. He's going to monitor it and see how it develops. I may need to go off remicade but I REALLY DON'T WANT TOO. My bowel is very healthy on it. My theory is if this is as bad as it gets I'd rather just stay this way. BUT there's a risk to your organs with lupus. I did read somewhere over the weekend drug induced lupus rarely attacks your organs. Therefore I suppose we just have to take the best advice from our doctors. Keep us posted on what you decide

 

[catisonthebeach]

Just curious if you decided to remain on the Remicade despite the drug induced lupus? If so would you please share on how things worked out for you? Remicade put me in remission but now I have drug induced lupus. I have had joint pain and swelling to the point of not being able to get off my couch. I started plaquenil but also had to take prednisone to allow time for the plaquenil to start working. I am dealing with lots of side effects from the prednisone so I will not want to use it again. My GI does not want to stop the remicade as my bowel responded to nothing else and now I am in full remission. I would have to agree. However, I am almost off the prednisone and hoping plaquenil will resolve the joint issues. Looking for someone with similar experiences and possible solutions. My rheumatologist has not seen another case like mine. Thanks for any information you have to share.
Cathy

 

[Babybrat1231]

I started Remicade in October after several months leading up to a diagnosis of Crohn's after I was hospitalized. I had the initial loading doses and have had my first 8 week infusion. The first loading doses went well although I did notice some muscle aches and pains here and there. My Crohn's is in remission. This last two weeks I started developing migrating arthritic pains in my joints that have become more and more severe. Nothing works to ease the pain except my husband had some pain killers that have helped me to sleep. My GI said I need to come off Remicade and just sent me prednisone prescription to help with the joint pain. He is recommending trying Entyvio. My pain is unbearable, every time I move and it effects different joints, today it's my shoulder, wrists and hip. Yesterday it was my ankles, knees and one elbow. This sounds so similar to what you are describing.