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Remicade or another medication causing symptoms

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Crohn's Disease
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Posted 4/10/2013 4:03 AM (GMT 0)
Alright I am hoping for some feedback on this. I started a new birth control at the end of January. I started Remicade at the beginning of March for my Crohns (I have already had surgery ..and then went on Entocort and Asacol, now trying to prevent surgery again). I have had two infusions already and I was taking the BC every day. I started to notice my hands and feet swelling up. My GI and Obgyn agreed to take me off the BC to see if that is the cause or if it is the Remicade, which I have been off of the BC for a week. Tonight my feet are incredibly swollen (which I have never had this issue until being on one of these medications). Any thoughts on this? Can Remicade cause this? I'm goign to call my GI in the morning because of the amount of swelling, but I am wondering if you have experienced this or not. I can tell certain symptoms are from the BC and some from the remicade, but this one no one is sure about right now. I am also fairly itchy on my face, arms, and legs (just started experiencing this today).I am assuming it is the Remicade, but can I have side effects 2 weeks after an infusion?
Posted 4/10/2013 4:15 AM (GMT 0)
You can have side effects the day of the infusion! It sounds like your doctors are taking you seriously and want to find the cause, crohns itself can cause swollen joints! But yes remicade can also cause this... As well as causing the itching - that and a small rash were my only side effects of remicade - my side effects went away after a whole, but I also ended up in a flare.

I would contact your GI again, keep them informed of ANY changes no matter how silly you think it is, this is your body you know if something's wrong! I saw someone have a reaction whilst being given their infusion and it was very scary, I also went 4 months on humira with horrible side effects hoping they would calm down, but in the end I knew my body and I had to tell my doctor what I wanted to do!

I hope you get some relief soon, swollen joints (espesh ankles!) is some of the worst pain I've been in, I hope it clears up soon! Remicade was a miracle for me while it lasted I hope you get your miracle too
Posted 4/10/2013 4:21 AM (GMT 0)
My husband went through a period of unexplained inflammation and swelling about 4 years ago. We do not believe it was due to remicade. We were told that it was either reactive arthritis from a recent c-diff infection, crohns related arthritis or reaction to a flu shot. He has since had a flu shot with no ill effects.

His symptoms were inflammation of the SI joint, an awfully stiff neck, and an incredible case of water on the knee. Until we got it under control with pred, he had to get his knee drained ever single day. Cortisone injections didn't help at all.

At that time, he was tested for lupus, and drug induced lupus and rheumatoid arthritis (Ana, anti-ds dna I think, and rf factor). His tests were negative for all. The rheumatologist we saw wanted to put him on methotrexate in addition to the remicade, but we just went with a course of pred, and it hasn't happened again. Knock on wood.

Your inflammation may not be due to remicade. Crohns itself can cause a lot of joint inflammation. I think you should follow up with a rheumatologist and your GI to get you relevant blood tests and start treating the inflammation.

I hope you get it under control soon. My husband's GI took one look at the size of my hubby's knee and immediately told him to see a rheumatologist. He felt that it wasn't remicade related, but he said the best person to help track it down and treat it is a rheumatologist.

PV
Posted 4/10/2013 11:38 PM (GMT 0)
Thank you so much! I called my GI and she got back to me instantly. I love having her because she is the first GI who wasn't trying to throw every medication down my throat. She is incredibly cautious and thorough which is nice. She is getting me an emergency appointment tomorrow with her to check everything out because today my hands became really swollen and I am starting to itch on my face, legs, and arms. We shall see, but thank you! I checked all of the side effects online and my GI has gone over them with me previously, but it is nice to hear from people who actually have Crohn's disease and have tried these medications.
Posted 4/11/2013 3:36 PM (GMT 0)
I just had my first infusion of Remicade yesterday and was told that you can have a reaction up to 2 weeks after the infusion. Also, from my past experience with Humira and Simponi, I wouldn't discount anything.

PV, as a side note, did you Husband's Rheumy do xrays of his SI joints? I have Ankylosing Spondylitis that first showed as inflammation in my SI joints, and I get a stiff neck, knee probs etc. It can take a long time (up to 10yrs) to show on an xray. I am RF negative.
Posted 4/11/2013 4:52 PM (GMT 0)
They could see inflammation in his SI joint and his knees. They could not see any degenerative changes, only inflammation. This is probably because this is the first time he'd ever had anything like that, he's never had pain in his SI joint before.

They tested his blood for rf factor, lupus, drug induced lupus and anti-ccp (for RA). All were negative.

The rheumatologist didn't think it was AS based on his presenting symptoms, how acute it was, and the fact that he was already on Remicade while it happened (she said it would be highly unusual to get that severe an attack of AS when already on remicade). She felt it was more likely to be reactive arthritis (he had just had a bout with c-diff less than a month ago), and reactive arthritis can also cause inflammation of the SI joint, and knees are usually majorly affected with reactive arthritis.

Anyway, knock on wood, he has not had a recurrence since. It's been 3.5 years without a recurrence, I'm hoping it was just reactive arthritis.

PV
Posted 4/11/2013 7:24 PM (GMT 0)
With the itching sounds like an allergic reaction. Antihistamine, Clariton or a allergy OTC med might help. Remicade affects people in different ways. (they gave Antihistamine to some at the infusion center to avoid stuff like that when I was getting Remicade.)

T
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