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Remicade serum sickness/Antibodies?

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Posted 8/10/2008 10:29 AM (GMT 0)
I was wondering if anyone has had these symptoms, and if they could possibly be a build-up of antibodies or something called serum sickness.

I have been receiving Remicade for over two years, and it has been a god-send.  It has truly changed my life for the better.  However, I am at the max dose of 10mg/kg every 4 weeks, and it seems to be losing it's "oompf."

I have never had a reaction to Remicade.  However, I am experiencing new symptoms a couple of days after my infusion.  They are:

1.  Increase in BM's/frequency/urgency

2.  Joint pain

3.  A feeling of being short of breath or winded, like I just got done jogging.

4.  Fluid retention

5.  Feeling of being "flu-like," with being hot/cold but no fever.

Has anyone ever experienced this?

Thanks!  Julie

Posted 8/10/2008 2:52 PM (GMT 0)
Hi Julie! My 18 year old son is just changing from Remicade to Humira and his story sounds very similar to yours. He was on Remicade for a year and a half and experience much relief from it. about a 9 months ago its effectiveness kept shortening and he was put on a max dose (same as yours) and over the last number of months he needed his infusions closer and closer together. about 4 months ago he began getting fairly intense joint pain just prior to needing his next infusion. He also complained of shortness of breath and those flu-like symptoms you mentioned. His joints would swell up and this would all resolve several days after he got his next infusion. This cycle has gotten shorter and shorter and he finally had a reaction during his last infusion. We are now waiting for approval to move to Humira. It is hard to leave Remicade because it has worked so well and infact only now has his gut issues returned as he is no longer covered by the remicade infusion. It sounds to me like your symptoms are related to the Remicade and either antibodies developing or some sort of reaction to it. Now that the remicade is out of his system he is no longer experiencing any joint pain or joint inflamation. Hope this is helpful.

Posted 8/10/2008 4:00 PM (GMT 0)
Bowlies, thank you so much for your reply. I am going to speak to my GI soon. We have talked about a switch to Humira, but my co-pay is extremely high. I am checking into assistance through Humira now. The best of luck to your son! Blessings, Julie

PS. I also forgot to mention that it seems like my sinuses are always plugged, with pain and pressure.....
Posted 9/4/2008 5:36 PM (GMT 0)
Hi Julie,

I had had Crohn's disease for over twenty years. I have had most of my small bowel removed due and I am on TPN. I have also been on Remicade for the past 5 years.

I do have severe side affects that are countered with premeds. I do believe that the Remicade has kept the illness in check.

I don't think the benefits from humira or Remicade will make much difference to me. The docs seem to prefer Remicade because it has been working.

I currently am at 390mg every 6wks and they want to up it to 700mg every 4wks.

Let me know your thoughts.

God Bless
David
Posted 9/4/2008 6:35 PM (GMT 0)
I get the joint pain alot.....and does anyone else get mouth sore or thrush all the way down the throat?

Posted 9/4/2008 7:45 PM (GMT 0)
Julie - I don't know if you saw my post from yesterday, but I wanted to make sure you know about this. My copay for Humira makes it unobtainable for me, so I had to do some digging for help paying for it. I'm sure you found the Abbot website, but just in case you don't qualify for help through them, try the Patient Access Network Foundation (.org). They help people with insurance "coverage" that doesn't cover nearly enough.

Good luck with everything!
Posted 6/7/2010 2:03 PM (GMT 0)

styxgurl said...
I get the joint pain alot.....and does anyone else get mouth sore or thrush all the way down the throat?


Right around time for my infusion and i have crazy joint pain, dont want to get out of bed, its all over.

Also have thrush in my mouth, luckily not all the way down my throat, since I'm quitting remicade hopefully it wont get any worse.  Any idea how to get rid of it?

Posted 6/7/2010 11:54 PM (GMT 0)
If it is serum sickness, it sounds pretty mild at this point.

My feeling is that you won't be able to mistake it if you have the real thing. It's not pleasant.

Ivy.
Posted 6/8/2010 2:18 AM (GMT 0)
I'm with Ivy, when the severe joint pain hits, you will know it. I think you should talk to your GI about these symptoms because remicade is the best med out there in my opinion, and if you stop it you cannot start it again. I am on Humira and while it is okay, it does not measure up to remicade in my experience.

Julia
Posted 6/8/2010 4:08 AM (GMT 0)
a serum sickness reaction should occur 5-10 days after an infusion
Posted 6/8/2010 3:08 PM (GMT 0)
I to am on Remicade and also take Imuran for the sores in my mouth and the extra joint pain that comes with my illness. Remicade has been the best thing that has happened to me and hope you can get on the Humira.
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