Remicade and infections

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

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.

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

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.