Remicade and TB

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husbandhascrohns
Regular Member


Date Joined Aug 2009
Total Posts : 20
   Posted 9/6/2009 5:23 AM (GMT -7)   

My husband was diagnosed with Crohn's disease in 2007.  He was doing well for about a year, then all the sudden things got out of control, and quickly.  He had surgery and ended up with a colostomy bag.  I think, naively, we both thought that would be the end of the disease--he'd have to learn to live with a bag, but he'd be able to live again.  Well, here it is 9 months later, and he's getting sick again.  He's in constant pain again (we use a rating system and he usually has a constant pain of a 3 but says now it's moved up to a 5).  The pain used to just be after he ate, now it's all the time.  He frequently throws up after meals (or dry heaves but manages to keep his food down) and he's started losing weight again.  He's also bleeding again. 

 

The doctor wanted to put him on Remicaide but is hesitant because he was exposed to TB as a child.  Now he's seeing a lung doctor and they're running all sorts of tests, but it's taking so long.  I know its good they're being cautious, but if he doesn't get on Remicaide soon, he'll be back in the hospital. 

 

Does anyone have an experience being on Remicade if you've been exposed to TB?  If he can't take Remicaide I don't know what we'll do :(

 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/6/2009 6:38 AM (GMT -7)   
Hi, I don't have any info for you, but did want to let you know that I will keep your husband in my prayers that they get this figured out soon.  Poor guy having to play the hurry up and wait gain.  I know how miserable that can be.
 
Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 9/6/2009 7:21 AM (GMT -7)   
(((hugs))) I am so sorry you are going through this. I don't really have any advice for you, other than it seems like your doctors really are taking the right actions - TB is a serious concern with remicade, and if they can give him the clear to start remicade, I think it will make him better. Remicade was a Godsend for my husband, and I sure hope he can start soon, and give him relief like it did for my husband.

Can you post the meds that your husband is on currently? Is he taking entocort or prednisone to try and control this flare while waiting for remicade? Is he on other immune suppressants like Imuran or 6-mp? What about other maintenance drugs like Asacol, or Lialda or Pentasa? Any probiotics? Perhaps if you posted his meds, we may be able to find other suggestions to help him in the meantime.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


husbandhascrohns
Regular Member


Date Joined Aug 2009
Total Posts : 20
   Posted 9/6/2009 7:35 AM (GMT -7)   
Currently he is only on Colazol and probiotics (Florastor). He tried many of the other meds, but saw no relief. Colazol seemed to be the best matience medication for him. He is not on prednisone. The doctor put him on that a year and a half ago and said "this will put you into remission. You can't stay on it long, but it's a short term solution." We were getting married and he wanted something that would help get him through the ceremony and honeymoon. It did NOTHING for him. He saw no change at all. During his hospitalization he was on IV prednisone (I can't remember the name right now) and it didn't help either. The other thing that offered some relief was Remicade which he had before his colon perferated. They stopped that though while he healed his insision and fought off the infection that he developed.

He never tried Imuran or 6-mp. Maybe that is something we should talk to his GI about.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/6/2009 9:43 PM (GMT -7)   
I was exposed to TB in my youth. I tested positive on my PPD back in 1990. At that point, I took INH (isoniazid) for a year. When I took Remicade (and Humira and Cimzia) the doctors just have me get regular chest x-rays.

Maybe your husband could meet with a pulmonary specialist to see about taking the INH for a few months and then starting Remicade.
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


husbandhascrohns
Regular Member


Date Joined Aug 2009
Total Posts : 20
   Posted 9/7/2009 5:05 AM (GMT -7)   
My husband did meet with a pulmonary specialist. The problem is, we're worried he doesn't have a few months to take the INH treatment. I'm worried my husband is going downhill and fast. He's lost about 10 pounds in the past 2 weeks. They're going to retest him for TB and hope that it's negative. If not, I guess we just wait.

I know TB is a very serious illness and precautions need to be taken....but Crohn's is serious too. It just feels like we can't win.

Sorry, I guess this is just more venting than anything else.
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