Possible sepsis from Remicade!

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/12/2009 4:35 PM (GMT -6)   
I know many of you thought I was having too much anxiety over my concerns about Remicade. I had 2 infusions and
the day after the 2nd one I started running high fevers - for 4 days at 102 to 103.

My primary care doctor is checking/treating me for sepsis. My CBC came back today and my white counts
are very high showing whatever I have is a bacterial infection not viral. I got a shot of Rocefrin yesterday, another shot today, and I have to go for another
shot tomorrow until my blood cultures come back and they see what is going on.

Sepsis (a bacterial infection in the blood) is one of the first serious side effects they show for Remicade along with lymphoma. I'm feeling better so I guess the Rocefrin is working
but if I have a fever in the middle of the night I have to go to the E.R.

These kind of reactions are what I was asking about here (not having too much anxiety) but just asking about to see if its common. At this point (without the blood cultures)
it is too early to say if it is Remicade caused or coincidental, but the point I am trying to make is that it is never silly, anxious or panic-like to ask lots
of questions about any medication that requires you to sign a consent form before taking it!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/12/2009 4:54 PM (GMT -6)   
I'm sorry you felt that I was attacking you about the anxiety. It's just that I was in such a bad place with my postpartum anxiety, and was helped so much by a few counseling sessions and Zoloft, that I don't want to see anyone else go through what I did. My mom suspected I had anxiety issues, and asked me to talk to my doctor about it, quite a while before I was able to realize/admit I had a problem. Now I wish I'd realized it earlier, because I feel like the anxiety "stole" some precious time with my newborn son. Having been in that place, I know it's hard for the person who is suffering from anxiety to realize they have a problem.

And my reason for asking you about anxiety wasn't just because of the one post about your fever, etc. I asked because you'd written quite a few posts before you even began Remicade and before your symptoms of sepsis began, so I just put that all together.

I never thought you were being silly. A person who is having trouble with anxiety isn't silly because it is a real problem. If you were having a problem with it, I just wanted to be able to help in any way I could, and, as I'm sure you know, you have to realize you have a problem to be treated for it.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/12/2009 5:20 PM (GMT -6)   
fruitgirl said...
I'm sorry you felt that I was attacking you about the anxiety. It's just that I was in such a bad place with my postpartum anxiety, and was helped so much by a few counseling sessions and Zoloft, that I don't want to see anyone else go through what I did. My mom suspected I had anxiety issues, and asked me to talk to my doctor about it, quite a while before I was able to realize/admit I had a problem. Now I wish I'd realized it earlier, because I feel like the anxiety "stole" some precious time with my newborn son. Having been in that place, I know it's hard for the person who is suffering from anxiety to realize they have a problem.

And my reason for asking you about anxiety wasn't just because of the one post about your fever, etc. I asked because you'd written quite a few posts before you even began Remicade and before your symptoms of sepsis began, so I just put that all together.

I never thought you were being silly. A person who is having trouble with anxiety isn't silly because it is a real problem. If you were having a problem with it, I just wanted to be able to help in any way I could, and, as I'm sure you know, you have to realize you have a problem to be treated for it.


It wasn't just you and I did ask a lot of questions before I started because I was very nervous about all of the side effects. I just found it odd that I had many responses from people suggesting I had anxiety because I assumed most people would be cautious/nervous about a drug with side effects like this. Perhaps I do have anxiety NOW because I am a nervous wreck waiting on my blood cultures because the outlook for sepsis is not always good. Whether it is sepsis or not this has scared me enough that I will have to give very serious thought to whether or not I want to have another infusion.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/12/2009 5:48 PM (GMT -6)   
I would be nervous, too, about having another infusion if it does turn out to be sepsis, and would give it a lot of thought. I've already read a lot about Remicade and other drugs like 6MP in the event that I have to make a decision about whether or not to go on them when I'm really, really ill. I know that I'll use Remicade if I need to get my UC under control before I'll consider surgery. I'm not at all suggesting you should have done the same as I did...it's just that I have a PhD in ag research, so researching things is very much in my nature. :) So, I guess that's partly why I was concerned about all of your questions.

So if it is sepsis, is it because of the Remicade itself, or because the infusion needle or your skin or something wasn't properly cleaned, therefore introducing the bacteria into your blood? I don't know a lot about sepsis, so I'm curious.

And I forgot to say it in my first post, but I hope you start feeling better quickly!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1915
   Posted 5/12/2009 6:15 PM (GMT -6)   
It seems unusual to get sepsis after just one infusion of Remicade but I guess anything is possible. It sounds like you are on the mend and that your doc did the right thing. Feel better!
diagnosed 1/09 with colitis,54 yo, colazal, fish oil, synthroid, cymbalta


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16449
   Posted 5/12/2009 6:27 PM (GMT -6)   
I am sorry to hear you have been so sick. I don't know anything about Remicade so I haven't been keeping up with your condition. I am happy you're getting better.

Diagnosed with mild proctitis in March 2007: Treated with Canasa 2x Daily
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/12/2009 6:29 PM (GMT -6)   
Once again, I don't think anyone here thought you were having "too much" anxiety over Remicade- the point being you obviously were/are experiencing anxiety over using the drug. The suggestion was that if the drug caused you so much worry, do you really feel the need to be on it? I don't think you get sepsis itself from Remicade, but if you have any sort of minor infection going on when you get an infusion, the drug can cause it to become sepsis. Your health was very compromised when you started Remicade, & chances are likely you had something going on at a molecular level that no one knew about. The infusion just amps all that up. I hope you feel better soon, & that this isn't a major health problem. Good luck on making a decision as to continue with Remicade or not.



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 

Post Edited (Eva Lou) : 5/12/2009 5:34:07 PM (GMT-6)


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/12/2009 7:18 PM (GMT -6)   
I've had two infusions. I felt great before I had the second infusion. I felt great the day after I got out of the hospital (a day after the first infusion). I've even declared my UC in remission for at least 2 weeks now!
2 days after my 2nd infusion I started with these very high fevers. They know its not viral because of the blood tests. I just want it to go away!

Eva Lou, before I started Remicade I read all the studies and research I could find and also found it helpful to post on the forums to get actual experience. When I weighed Remicade against surgery, I decided on Remicade. I have no idea if it was the IV steroids or Remicade that finally put me in remission. I just thought I was finally going to feel better now that I am down to having 1 BM a day. This definitely threw me for a loop.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/13/2009 7:07 PM (GMT -6)   
Well I am in the hospital with pleurisy and they have ordered so many tests. I have horrible fever and pain in my lung.
GI has said he feels it is Remicade reaction. They are testing for a ton of strange bacterial illnesses.

So no more Remicade for me, and just to let everyone know that those "small but serious risks" can happen to anyone.

I am terrified because I've been sick for a week now and they don't know exactly what's wrong or how to treat it! They suspect pneumoia
and or pleurisy.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 5/13/2009 9:27 PM (GMT -6)   
I am so sorry you are going through all of this! I hope they figure everything out and you make a speedy recovery. Big hugs.
32 yr old female
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?


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/14/2009 8:04 AM (GMT -6)   
I'm sorry this happened to you Shelly, and hope you are feeling better soon.

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 

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