UC treated wtih Remicade resulting in Bronchiolitis obliterans organizing pneumonia (BOOP)

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EvilEve
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/18/2009 12:19 PM (GMT -6)   

Hello - I am new to this group.  I was diagnosed with UC Aug 2008.  Very bad initial flare which was initially diagnosed as food poising in the ER and treated with antibiotics.  Got worse on those... obviously in light of what was really wrong.  Got in to see GI doc.  Went for first colonoscopy that week, which was not a complete scope due to doc's inability to get all the way around the colon - I felt the scope and was apparently yelling at him to stop!!     I was placed on Asacol 3xday and canasa.  Symptoms were mild/tolerable and only felt bad with stress and poor food choice for a couple of months.  Moved to CA, and got new GI doc who performed 2nd scope Dec 2008 under anesthesia.  Formal diagnosis of UC through entire colon at age 38... I was a smoker for 20+ years and doc believes nicotine masked symptoms of UC for a large part of those years.  Jan/Feb 2009 went into horrible flare with cramps, urgencies, accidents, 20-30 trips to the bathroom a day.  Doc put me on 30 mg steroids and then upped to 60 when I did not respond.  Never responded to steroids, rawasa, and nada.  Prescribed Remicade.  Almost was hospitalized day I started Remicade due to vomiting, couldn't leave bathroom.  Forced myself to infusion center and I was glad I did.  The next day I went ONCE!!  Had mild stomach gurgles that first evening, but went back to a normal routine.  Underwent Remicade induction 0,2,6 and then 8s with no problems.  After 4th treatment we went to every 6 weeks b/c symptoms were returning, but I was also weaning off prednisone.  24 hours after my 5th treatment in May 2009, I started developing pleurisy symptoms - chest pains, shortness of breath, impossible to breathe while just walking.  Call ed GI doc next day, got in to be seen next.  Doc's partner ordered chest x-ray which was perfectly clear.  He kinda just blew me off.  Symptoms continued... got worse for a couple weeks, so I called normal GI doc to touch base, he told me to get to pulmonologist and ER if needed.  Went to ER two days later.  CT showed 70% inflammation in right lung and inflammation in left lung.  Oxygen levels were ok so I was released with orders to restart pred... I had just gotten off pred!!  Was in touch over weekend with GI and lung doc.  Pred increased over phone by lung doc to 40 mg, and prescribed asmanex.  Went for broncoscopy (process so much easier that colonoscopy!!), which revealed only inflammation, but thankfully no cancers!  Went for another CT, which showed some clearing of the lung.  Two weeks after second CT (this Monday) chest x-ray showed possibly worsening of inflammation.  Admitted to hospital next day for lung biopsy surgery with cardio/thoracic surgeon.  Initial result is patchy Bronchiolitis obliterans organizing pneumonia (BOOP).  This form of lung disease is rare, but rarer in ibd patients.  We are still waiting on second results from Stanford, but pulmonologist is 90% certain it is related to Remicade.  I have 80% chance of recovery.  So far no permanent damage to my lungs (fibrosis).  But I am back on 80mg of pred a day once I am released from hospital.

 

Does anyone have any experience of knowledge of BOOP as a result of Remicade?  I am so frustrated with the disease and it has just started....


Hopeful4uc
Regular Member


Date Joined Jun 2009
Total Posts : 90
   Posted 7/18/2009 6:33 PM (GMT -6)   
So sorry you are going through this!  Have UC is totally bad enough.  I am on Remicade only on my 2nd dose, so not familiar with the BOOP that you have developed.  I would believe that Remi supressed your system enough to have you develop this.  It sounds like you are on the correct track being treated appropriately.  Are you still continuing Remi?  I have found the website  www.uptodate.com is very helpful, I'm not sure if it's free or not....have the MD's print out some info from that webside about your condition.  I'm also scared about being on Remicade, I have had UC for about 4 years....just getting worse every year, now I have pancolitis....having bloody D about 10 to 15 times a day...Remi has so far helped, not totally in remission....but better.  I have goofy side-effects....like I'm way hyper....headache, body aches, and only a little chest pain the day after IV infussion.
Sorry I can't help, but I only can understand how you feel.  I totally had this disease myself.  This forum has helped me and many veterians visit this site and will respond.   Please keep us posted.  I will be praying for you.
 

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/19/2009 3:19 PM (GMT -6)   
      So sorry you are going through this and I will keep you in my prayers.  My GI doctor was pushing Remicade on me for a few years.  I have been on 6MP for about six years, he pushed for that too and I finally gave in.  Well, 6MP is not keeping me from flaring.  Last year I was hospitalized for ten days with UC.  My GI's associate was assigned my case and he said I DEFINITELY am NOT a candidate for Remicade.  I was exposed to the TB virus when I worked in a hospital lab back in the 60's.  He explained that Remicade could activate the TB virus with devastating results.  Enough for me!!!  I still see my original GI doctor (been with him almost eleven years) but we have a wonderful doctor/patient relationship and I can tell him to bug off when he even mentions the word Remicade.
     I am sure you will be fine even though you are going through H*** right now.  It sounds like you are in good hands.  God bless.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/19/2009 3:36 PM (GMT -6)   
I'm so sorry you're having these issues. Like all medications, Remicade does have potential side effects in addition to the benefits it has for some.
 
How very fortunate that this is reversible, but I know it's very frustrating waiting to get better.
 
I took the opportunity to educate myself about this syndrome, which I'd never heard of before. For anyone else who is interested, here is a good article:
 
http://www.epler.com/boop1.html
Judy
 
Ulcerative colitis forum co-moderator
 
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"
 


PainInTheButt
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 7/20/2009 1:08 AM (GMT -6)   
I have a similar story to yours.  Diagnosed with UC 11/2005.  Started Remicade 3/2006.  Diagnosed with BOOP 8/2006(spent one month in the hospital.  cured via chemotherapy and 1000 mg of steroids).  RE-diagnosed with Crohn's Disease 11/2007.
 
Currently on Humira weekly.
 
I am not on here often.  email me amystorch@aol.com
Cytoxan Infusion-Once a month
Prednisone 20mg
Nexium
Zoloft
Coumadin
Bactrim
Percocet
Ativan

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