UC is causing my lung issues, not the remicade

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dodge08
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 2/26/2009 7:59 PM (GMT -6)   
As I mentioned I've been fighting what we thought was a respirtory infection for about 3 weeks, had to postpone my infusion...chest x-ray showed little nodules so they thought it was TB (even though I had the TB tests), they did a bioposy, finally got the results today...
 
it's not cancer, not TB, not fungal, not pneonmia, but rather non-caseating granulomas -- which the Resp. Dr told me occur in some people with UC, he said while others with UC might get sore joints, or a rash, I get this in my lungs, from my very bad flare in Dec/Jan....
 
So the good news is I can continue to get my Remicade (which after 2 infusions as really helped) because the better my UC is under control the better my lungs will be.
 
Wow, I was sure this was all caused by the Remicade, when it's actually the oposite!!
 
He said it's rare, has anyone else had this experience?  He said it's caused by IBD/UC or sarcoidosis (which I"m not sure what that is yet)
 
Male 38, diagnoised in 1998, first major flare in November 2008, have had 2 remicade infusions
have used pentesa, salofalk pills (mesalamine), and enema's.
Started salofalk again until I can get my next remicade.
currently decreasing predisone, take folic acid, calcium, vitamin D, HMP powder and a multi vitamin


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/26/2009 10:52 PM (GMT -6)   
Wow, never heard of that.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. Doing OK, but still have some bad days. 


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 2/26/2009 11:09 PM (GMT -6)   
I've been having lung issues...I don't feel like I can catch my breath properly and even just a little thing like walking up the 3 flights of stairs in my apartment leaves me gasping, I thought it was because I was tired but maybe it's those bump things? What were your symptoms?
21 yr/old Uni student. Vancouver, BC
Imuran 150 mgs/day

Prednisone is no more! (last dose Feb 16/09)
Diagnosed UC Sept. 2007
Cal-Mag, CoQ10, L-glutamine. Also now trying probiotics Bio-K (acidophilus)


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/26/2009 11:59 PM (GMT -6)   
i have had lung issues with my CD/UC...diagnosis recently changed.
both diseases can affect the lungs.

dodge08
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 2/27/2009 7:58 AM (GMT -6)   
My symptoms were getting winded really easy -- shovelling our little walk and I felt like I'd ran a marathon, I felt like I could never take a really deep breath, and at times pressure on my lungs...and I really wasn't coughing much even though it felt like I needed to.

Feeling very tired (but that might be related more to the flare)
Male 38, diagnoised in 1998, first major flare in November 2008, have had 2 remicade infusions
have used pentesa, salofalk pills (mesalamine), and enema's.
Started salofalk again until I can get my next remicade.
currently decreasing predisone, take folic acid, calcium, vitamin D, HMP powder and a multi vitamin


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/27/2009 8:25 AM (GMT -6)   
I had lung issues the last 3 months of cohabitation with my colon. My cough was chronic but several xrays could not identify the source. My doctor chalked it up to a manifestation of UC. Once I had my colon removed the cough and skin condition went away.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/27/2009 9:20 AM (GMT -6)   
What a relief, in a horrible sort of way! So I guess the more infusions you get, the better your lung condition may be, huh? I'd still be a nervous wreck- I freak out at the slightest sign of respiratory distress. Thankfully, the bulk of my UC symptoms are confined to my colon & it's "workings"... I don't know what Id do if I started to suffer from a lot of extra-intestinal manifestations.

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


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 2/27/2009 2:15 PM (GMT -6)   
I had know idea it could effect my breathing, I just had a stress test awhile back that came back positive because of the breathing hard at a early stage of the test and notice breathing to be more of a problem when flaring, I guess I should ask my cardioligist about this. what kind of test do they do t determine this.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.

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