New here really need some help!

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dodge08
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 2/16/2009 12:41 PM (GMT -6)   
Hi,
I hope it's ok to just post.
I have had UC for 10 years, was controlled with Pentesa supportistory until November, I went into a major flare where I ended up in the hospital for 2 weeks, they went throught lots of different medication, finally started presidone and Remicade and it has been fine.
 
I have had 2 Remicade infusions, my 3rd was sheduled for last week but I have come down with some sort of lung and sinus infection, they thought it was pneonmia, but it is not and I spent 5 days back in the hospital last week, they did a lung bioposy and are waiting for results.  They have me on two more antibotics for some sort of bacterial infection.
 
Again I will have to delay the Remicade. My anxiety is through the roof not wanting to have another flare.
Has anyone been in a similar situation?  Will I need to go for the surgery? I called my Gastro dr this morning to explain everything and he said he can't see me till next Monday.
 
Thanks so much.

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/16/2009 2:55 PM (GMT -6)   

Hi dodge - welcome to the forum!  Sorry you're feeling so sick.  You must have been doing really well to control your UC with just a suppository!  Wow - that would be nice!  Glad to see the Remicade is finally working for you.  Sorry about the lung infection.  Are you currently in the hospital - or are you home recuperating now?  Do the antibiotics seem to be helping?  How's the UC behaving?  I can't believe your gastro won't see you till next week.  I wouldn't drive myself crazy worrying about another flare.  Stress is one of the contributing factors to flaring - so try to stay calm.  I don't think you have to worry about surgery just yet - you gotta take it one step at a time.  If remicade is not for you - there are still other things to try - Imuran, 6mp, Humira.  (I'm assuming you've already tried all the regulars Asacol, Colazal, Lialda, etc.)

Keep us posted on how you are doing.


Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


dodge08
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 2/16/2009 5:49 PM (GMT -6)   
I haven't tried Imuran, 6mp or Humira - my doctor really pushed remicade....I also wonder why I went from controlling it for 10 years with pentesa (occasionally doubling up for a few days if I had a bit of cramps) to such a severe flaure they couldn't get under control.

I'm out of the hospital now and just need the antibotics to run their course. I'm not suprised I have to wait till next Monday to see him, as there is such a shortage of GI's and his wait list for an initial visit is almost year.

My UC is behaving right now, I'm just worried as the days go on and my remicade is delayed.

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/16/2009 7:08 PM (GMT -6)   
try popping the supps if you're concerned.  they always work for me if I have to stretch out my remicade intervals.

Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 2/16/2009 8:48 PM (GMT -6)   
     Hope you were tested for TB before starting the Remicade.  I did LOTS of research on Remicade because my GI was pushing it too.  Back in the 60's I worked in a hospital lab and was exposed to the TB virus.  I tested positive on the skin test back in 67, had a chest xray which was negative.  It was explained that although I was exposed to TB it is not active in my system nor am I a carrier.  When I was doing the Remicade online research it mentioned that Remicade can activate the dormant TB virus and it could actually be fatal.  FORGET THAT!!!  My doctor tried to talk me into some shots I could take...yada yada yada.  No way!
     Another word to the wise.  Are you aware that doctors are getting tremendous kick backs from the drug company that produces Remicade?  Our neighbor has her PhD in pharmacology and acknowledges this fact.  So there ya have it.  So next time your doctor pushes it tell him to pay for his own cruise.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 2/16/2009 10:30 PM (GMT -6)   
Just a suggestion, if you are taking antibiotics eat some yogurt with active culture, maybe Danactive or find a good quality probiotic to try and keep the good bacteria in you.

dodge08
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 2/17/2009 8:10 AM (GMT -6)   
Yes, I was tested for TB before the initial infusion came back negative, but I think that was what they were so concerned about the lung infection that it was TB (it has been ruled out now). My wife said the same thing about the Remicade - wondering if the doctor gets money for prescribing it -- but I'm not sure -- I think the system works a little different in Ontario, because of the way the province is involved. But who really knows.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 2/17/2009 11:46 AM (GMT -6)   
I don't know much about it but it seems weird for you to jump from using suppositories to remicade. Did they try other treatments? I think remicade is something you have to continue using forever once you begin using it. There are a lot of people here who seem to do amazingly well on remicade but most have tried a handful of treatments before resorting to remicade. I hope you are feeling better soon.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)

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