Paranoid about Remicade Side Effects…Red Lump

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New Member

Date Joined Sep 2008
Total Posts : 9
   Posted 4/22/2009 9:46 PM (GMT -6)   
This question is twofold:

1.) For anyone on Remicade (or other drugs, I'm sure), do you ever find yourself becoming paranoid about the potential side effects? I remember doing this on Prednisone too, but that was a bit different because the side effects are well-documented. I've had about six infusions now and I find myself second guessing everything! "Are my knees hurting more today?" "What's that pain on my left side? Is it something to be concerned about?" "Has the Remi quit working?" It seriously goes on and on!

I never used to be this way, but I was taking Imuran for a couple years and suddenly developed jaundice...only I was just going on in my happy little oblivious world thinking I had the flu or something until I looked like a freakin' Oompa Loompa and was peeing an amber color for several days...then my husband pushed me to go to our walk-in clinic, and I was still thinking "oh, it's nothing! Look, it's time for my Imuran!" Heehee. Whoops. So now, months later, I think I'm over analyzing every possible side effect of the UC drugs.

2.) With that said....a few days ago I developed a tender red lump on my left upper arm. In my previous life (before UC) I would've chalked it up to a random spider bite or something weird that would go away on it's own...but the lump hasn't changed. The very tender part is a little smaller than a dime, but the soreness extends beyond that. Tell me I shouldn't be worrying about this?

Post Edited (MollyMonster) : 4/22/2009 8:49:35 PM (GMT-6)

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 4/23/2009 12:15 AM (GMT -6)   
It probably isn't anything serious, but if you're concerned you should see your doctor. I'm always careful to clean any cuts or scrapes and put antibiotic ointment on them, along with a band-aid. In this world of MRSA, that's a smart thing for everyone to do.
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"

Eva Lou
Veteran Member

Date Joined Sep 2006
Total Posts : 3442
   Posted 4/23/2009 6:31 AM (GMT -6)   
I don't know what to tell you about the red bump- it doesn't sound all too serious. Just keep an eye on it. But I TOTALLY am the same way about Remicade- my 2nd infusion put me in the Intensive Care unit for 5 days! Jaundice, hepatitis, bacteremia, strep pneumonia... all thanks to the infusion! So ever since then (& we're talking 2 years ago!) I freak out every single time I go for an infusion. I get all paranoid, & practically have mini panic attacks. I have to keep telling myself, "You're fine, you're healthy". Then after the infusion, for about 2 weeks I monitor everything- every breath I take I listen for that deep scratchyness you get w/pneumonia. Any ache or pain, I stop & think about it much longer than the normal person. In some way I think I'm absolutely crazy to be like this, but actually I think it's smart- about 2 infusions ago, I did develop pneumonia again about 10 days after the infusion- being able to recognize that *something* was wrong, I basically ran to my PCP, who put me right on antibiotics. Intead of waiting it out & most likely getting much more ill! So I prefer to think of it as being "proactive" than paranoid! smilewinkgrin
diagnosed with UC '02
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement

Veteran Member

Date Joined Mar 2008
Total Posts : 678
   Posted 4/23/2009 7:52 AM (GMT -6)   
I'm paranoid about everything and I'm not even on anything yet! I can't imagine how bad I will be when I start 6mp.
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon

New Member

Date Joined Sep 2008
Total Posts : 9
   Posted 4/23/2009 9:22 AM (GMT -6)   
<lol> I like the "proactive, not paranoid" mantra!

Like you guys said, I doubt the bump serious, but it's more the matter of questioning every little thing. I miss my old carefree self.
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