Lung issues, Remicade, and Crohn's

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bkoach2
Regular Member


Date Joined Nov 2007
Total Posts : 24
   Posted 11/22/2007 9:04 AM (GMT -7)   
confused  

I am being followed both locally and at the Mayo Clinic for lung infiltrates seen on CT scans. The scans are ambiguous, with even some improvement seen between scans. I have had a normal bronchoscopy with no cultures found.  I have no breathing symptoms that I know of.  Since I had been on Remicade, because of the possibility it had contributed to the infiltrates, I am not getting the infusions.  One of my Pulmonologists strongly leans toward an open lung biopsy (partly because my Gastroenterologist understandably needs an okay on the lungs in order to proceed) and the other Pulmonologist leans toward waiting for future scans show improvement. My Crohn's status is marginal through all of this. Any help or referral much appreciated.

 


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 11/22/2007 11:33 AM (GMT -7)   
I actually had a severe RARE reaction to remicade in my lungs so I had to get off. Which was hard because I think @ the time it was really just beginning to work for my Crohn's but I had to get off. Is the Humira helping you? I think the MAYO Clinic is a Fabulous place. So now what exactly does your Gastro say or think? What symptoms do you have?

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 11/22/2007 12:23 PM (GMT -7)   
There was actually a clinical trial for Remicade to treat COPD. It was stopped early due to some severe side effects. I don't remember all the details. I think it might have been PB4 who once posted an URL to this information but can't swear on that. I was scheduled to start Remicade. I have COPD. When I heard that they were running a clinical trial to test Remicade's efficacy for treating COPD I was quite hopeful. What the heck treat two diseases w/one medication!! HOWEVER, when I went to CenterWatch to see if they were conducting a clinical trial in my area, the trial had been closed - early. That made me leary enough I cancelled my scheduled appointment for the first Remicade infusion. Later, when I read why the clinical trial was stopped early I thanked my lucky stars I had changed my mind and refused Remicade treatment!!!!
 
Mayo has to be fully aware of that clinical trial and its results and I sure would be pushing the Mayo pulmo for full information on that clinical trial. Who is your Mayo gastro? I was assigned to Dr William Tremaine.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 11/22/2007 12:30:23 PM (GMT-7)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/22/2007 1:37 PM (GMT -7)   
Hi Just wanted to let you know that I have COPD and that I was on Rem. for 6 months .I am off it now because I was still having D .I did get a bad cold around that time. I feel a bit hung in the air now because I am not sure how the biologics are going to work with my condition. My lungs are taking a long time to clear up after the cold. Will be iterested to know what they decide and how you are doing. So have they put a name yet to what is going on with your lungs.Wishing you all the best. lol gail

bkoach2
Regular Member


Date Joined Nov 2007
Total Posts : 24
   Posted 11/22/2007 2:15 PM (GMT -7)   
Thanks to all.  I'm using my home town Gasteroenterologist since the Mayo team had no new insights on the Crohn's part of my situation ... mainly (as does my home Doc.) they needed to know what's going on with the lungs to decide about a return to Remicade (in light of issues with Rem and TB, Lymphoma, et.al).  Wondering if the Rem cotributed to the infiltrates.  The condition (by the coursed of the lung images) is not COPD, or TB, or a Fungus, and probably not cancer.  I have no trouble breathing.  Issue now is whether of not to undergo a biopsy to look at tissues.  The diagnosis is unclear.  The Mayo Pulmonologist wants to wait for further improvement (on their own) of the lungs, but without without knowing the causes my Gastero. has no way to responsibly decide as to a return to Remicade.  Interesting about the COPD trials with Remicade.

bkoach2
Regular Member


Date Joined Nov 2007
Total Posts : 24
   Posted 11/22/2007 2:23 PM (GMT -7)   
CrohnieToo said...
There was actually a clinical trial for Remicade to treat COPD. It was stopped early due to some severe side effects. I don't remember all the details. I think it might have been PB4 who once posted an URL to this information but can't swear on that. I was scheduled to start Remicade. I have COPD. When I heard that they were running a clinical trial to test Remicade's efficacy for treating COPD I was quite hopeful. What the heck treat two diseases w/one medication!! HOWEVER, when I went to CenterWatch to see if they were conducting a clinical trial in my area, the trial had been closed - early. That made me leary enough I cancelled my scheduled appointment for the first Remicade infusion. Later, when I read why the clinical trial was stopped early I thanked my lucky stars I had changed my mind and refused Remicade treatment!!!!
 
Mayo has to be fully aware of that clinical trial and its results and I sure would be pushing the Mayo pulmo for full information on that clinical trial. Who is your Mayo gastro? I was assigned to Dr William Tremaine.

     
Thanks ... I'll mention the trial to my Mayo Pulmonologist.

bkoach2
Regular Member


Date Joined Nov 2007
Total Posts : 24
   Posted 11/22/2007 2:25 PM (GMT -7)   
CrohnieToo said...
There was actually a clinical trial for Remicade to treat COPD. It was stopped early due to some severe side effects. I don't remember all the details. I think it might have been PB4 who once posted an URL to this information but can't swear on that. I was scheduled to start Remicade. I have COPD. When I heard that they were running a clinical trial to test Remicade's efficacy for treating COPD I was quite hopeful. What the heck treat two diseases w/one medication!! HOWEVER, when I went to CenterWatch to see if they were conducting a clinical trial in my area, the trial had been closed - early. That made me leary enough I cancelled my scheduled appointment for the first Remicade infusion. Later, when I read why the clinical trial was stopped early I thanked my lucky stars I had changed my mind and refused Remicade treatment!!!!
 
Mayo has to be fully aware of that clinical trial and its results and I sure would be pushing the Mayo pulmo for full information on that clinical trial. Who is your Mayo gastro? I was assigned to Dr William Tremaine.

      I was officially with Dr. Pardy but actually saw a Fellow (Resident) named Thia.
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