Just joined-lupus issues with crohns?

[Kristin]

Hello-I've just joined this group. i've had crohn's for over 8 years now and have been on remicaid for 7 years. I recently shortened my remicaid infusions from 10 weeks to 8 weeks because it seemed like I was having some flare ups and now I'm having weird pain and my eyes and face are totally swollen. I am a bit freaked out about remicade induced lupus. Trying to get in to see my GI asap. i'm 43, with two kids under the age of 4. I'm exhausted (obviously) but I do not fee like me, mood swings, my body is aching, unexplained bloating and I'm really panicked at the moment. Has anyone had massively swollen eyes?? please help, thank you

 

[Angrybird]

Hello Kristin and welcome to the forum, I myself had remi induced lupus. Whilst my eyes/face was not swollen I did start getting red marks around my eyes and all over my elbows, knuckles and knees. I also had awful pain in all my joints and neither standing, sitting or lying down helped and my fingers stiffened up so much they looked like claws. My bloods started showing positive markers or lupus as well. These symptoms all eventually faded once I had stopped the remi and had IV and then tablet steroids.

Where are you getting the pain? How long have you had these symptoms? You said you have been having flare ups - do you mean the tum or these other symptoms? When you have the infusions are you given anything before its started?

I am sorry you are having these difficulties, if you can't speak to your GI and you feel your eyes/face are bad enough perhaps get to an out of hours doc or a&e so that if you are having a reaction they can give you something for it. Really push to see someone about this, even if it is not the Remi causing these symptoms it needs to get sorted for you hun.

Pls keep us updated on how you get on.

AB
xx

 

[David]

Hi Kristin and welcome to the community

I'm so sorry to hear of your reaction to Remicade You poor thing.

You may want to check out our Remicade support forum and connect with others on it. You might find some answers and comfort there.

I wish you all the best. We're here for you anytime.

 

[Trysha]

Hi Kristin,
Sorry you are having this bad reaction to Remicade.
Perhaps you should go the the ER and get some help, you should not wait for a GI appointment, unless he/she can see you immediately'
You need some help as soon as possible with the kind of symptoms you describe.
Never take chances with eyes especially.
Feel better soon
Hugs and best wishes
Trysha

 

[Kristin]

thank you for the responses. the swelling has gone down a bit, I spoke with my doctor yesterday afternoon and I'm going into the office Monday morning to have blood tests and some other tests done. I like my gastroenterologist and trust his instincts overall. I hope to have some better answers monday afternoon. Thank you for your support. I certainly hope we can get to the bottom of this, it's very worrisome.

 

[David]

Best of luck to you Kristin. Please keep us updated and let us know if there's anything we can help you with.