Remicade and infections

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soppendeuff
Regular Member


Date Joined Jun 2008
Total Posts : 27
   Posted 6/18/2008 3:45 PM (GMT -7)   
Hello. I'm new around here.

I've been taking Remicade for the past seven years. It has treated me quite well on the Crohn's front. However, I've had frequent, misery-inducing respiratory infections throughout the course of the treatment. The past year, I have been terribly sick 9 out of 12 months.

This brings me to my question: do you all experience more infections with the anti-TNF drugs? My doctors treat me like a whiny complainer, which is infuriating and not the least bit helpful. I'm to the point where I have to choose between constant Crohn's suffering or suffering with outrageously bad sinus infections that have included surgery and emergency room visits as a result (on a level unknown to me before the Remicade...I used to be a healthy person...sigh..).

To those who may be thinking worry about the Crohn's first (logical, I know), let me emphasize that the intensity of these infections and the impact on my life is equal to what active Crohn's does to me.

I wonder if one of the other anti-TNF's would be better for me, as Remicade seems to obliterate my immune system. I'm also toying with the idea of Prochymal clinical trials. Any thoughts? I like my doctors, but they really don't understand what this disease (and the medications) can do to a person.

Thanks for reading,
Leslie

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/18/2008 3:57 PM (GMT -7)   
I have not tried the TNF's but once I started immune suppressents I too started to get more sinus infections-personally once I started using flonase to control the respritory allergies the sinus infections pretty much stopped but that might not be the answer for you.
Ihope you find some relief soon.
Sj

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 6/18/2008 3:59 PM (GMT -7)   

I can sympathize.  For the last 6 years I've had way more sinus problems than Crohn's problems -- and I'm not even on Remicade (or Humira).  I, and my doctor, are very hesitant to put me on immunosuppressants because of my sinus issues (about 25 sinus infections and 4 surgeries in a 4 year period).

Are your respiratory infections primarily bacterial sinus infections?  Or do they sometimes (or often) involve the lungs?

If they're involving your lungs, I don't have much to suggest.  But if they're sinus infections, you might be able to do some things to help.

How often have you taken antibiotics for sinus infections?  What antibiotics have you taken?

You mentioned sinus surgery.  When did you have it and what exactly did they do in the surgery?

Are you taking a steroid nasal spray like Flonase or Rhinocort every day?

Have you tried daily sinus saline rinses?  After my 3rd sinus surgery I started doing these three times a day and they made a world of difference.  I haven't had an infection since, though I do still have lots of drainage.

Maybe with some of these tricks you can stay on the Remicade for your Crohn's but avoid, or at least minimize, the sinus infections that seem to result from your immune suppression.


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 6/18/2008 4:03 PM (GMT -7)   
I find that I get sick less since I've started 6mp and Remicade. I used get bronchitis every few months but I've only had once since starting Remicade 1.5 years ago. I don't seem to get colds as often either.
Jodi

Remicade and 6MP


soppendeuff
Regular Member


Date Joined Jun 2008
Total Posts : 27
   Posted 6/18/2008 5:32 PM (GMT -7)   
In response to beave:

The sinus infections are bacterial. Rarely experienced lung involvement. I believe I took 13 courses of antibiotics in the 9 months...Levaquin the most often, amoxicillin, clindamycin and Biaxcin too. I actually didn't have sinus surgery - I had my tonsils out.

My doctor poorly chose to give me Remicade when I had a light fever a couple of days after seemingly resolving a strep-like throat (rare for me). That really threw down the gauntlet. My tonsils were so swollen the next week that I was sent to the emergency room because it was feared that my ability to breathe would be compromised. After antibiotics still didn't work, they decided I probably had lymphoma from the Remicade and took my tonsils out. Thankfully, they were wrong about the lymphoma.

In any case, that was the beginnning of the 9 month long infection. I had to stop the Remicade to give my immune system a rest (my idea...gastro didn't seem to care about the sinus suffering) and eventually it went away and I resumed the infusions. Three months later, I've been back in infection land for three weeks now and wary of my next infusion.

I don't take Flonase or Rhinocort, but I have started with the neti pot rinses once a day. Seems to help somewhat. I would be willing to try the sprays, but if I decide to do the Prochymal trial, I can't add any steroid-like medications for the time being.

I guess I'm wondering if the other TNF meds might do me better because I'm a little worried about being in a trial. It seems like people are getting good results from Prochymal, but I'm loathe to take a risk and take a bad situation and make it worse.

Thanks for your responses.
Leslie

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 6/22/2008 8:12 AM (GMT -7)   
petittarte said...
I find that I get sick less since I've started 6mp and Remicade. I used get bronchitis every few months but I've only had once since starting Remicade 1.5 years ago. I don't seem to get colds as often either.

I thought you couldn't take 6mp and Remicade together?  I used to take 6mp and am now on Remicade.
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Oxycodone, Protonix, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9
 
Presently healing from a flare and 2 week hospital stay, during which abcess was drained by surgeon


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 6/22/2008 8:18 AM (GMT -7)   
When I first started Remicade they would also put you on either Imuran or 6MP because you were less likely to develop antibodies to the cade. Now they say you shouldn't take the two together because it increases you rate of some type of cancer. My doc wanted to take me off of the 6MP because of this and I refused. I don't know whether it has been the 6mp, the remicade or the combo of both that has kept me in remission and I'm not willing to chance going off the 6mp and finding out that it has played a key factor in my wellbeing.
Jodi

Remicade and 6MP


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 6/22/2008 3:29 PM (GMT -7)   
I use to suffer terribly with sinus infections which ended up turning into an UR infection. Those stopped while I was on Remicade for 3 1/2 yrs. In use saline sprays and flush my sinus with it and I have had great results. Susie

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