medication question

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solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 2/10/2009 10:14 AM (GMT -6)   
I am in a flare right now :(
 
The last BAD flare was 6 years ago.  I was on Prednisone and I reacted terribly to it but in the end it did the job and got be back in remission.  I said I would NEVER, EVER go back on prednisone....too many bad side effects, my quality of life was terrible.
 
I have been on Asacol ever since and deal with rectal bleeding with Salofalk enemas when needed. 
 
I knew things were not looking good early January when my BM's became very smelly and I was starting to cramp.  Jan 27th the major diareha started, 3 days later I was back on 40 mg pred.  10 days later with little releif, ended up in Emergency and 18lbs lighter.  Very week from all the diareaha and blood loss.  Was given IV steriods for 2 days.  I had a sigmoidoscopy only to be told things don't look bad at all.
 
I chalk that up to having the Prednisone in me for over a week.  I will be honest withyou, I am very discouraged because when I get sick, I get violently sick.  I have a husband who has Muscular Dystrophy and my youngest child has Down syndrome, I can't be sick, it's too hard.  I want my colon out but when I had my sigmoid, it shows that things are clearing up nicley but I don't want to be on steroids. I am a mess on them.
 
My doctor has mentions Remicade.  I was told yesterday I would need 3 infusions, one every 3 weeks then it will go to every 2 months at $4,400.00 a shot.  I am looking into a drug benifit program right now.
 
My question is...is this a short term solution until the flare is over or is this a long term thing?  he has mentioned  Imuran as well which I don't know about.
 
I was hoping that my colon was too bad to fix and they would have to do emergency surgery and be done with it. 
 
I don't know if I am making sense to anyone, I just feel so low right now  cry   
 
Well, that's it.
 
Thanks
 
Cindy
 
45 yrs old. Mom of 3. Youngest child has Down syndrome and husband has Muscular Dystrophy...Stress is a factor for me.
Diagnosed 2001, Ulcerative Pan Colitis. Hospitalized 1 month.  
Symptom free and medication free for 5 years.
Flare October 2007. Asacol 8, 400mg and Salofalk every night.
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/10/2009 10:28 AM (GMT -6)   
Remicade is intended to be a maintenance therapy; people who stop it after a time often are never able to use it again. It can be a wonderful thing for those of us for whom it works, but it does represent a committment of time (2-4 hours every two months) and money (depending on insurance coverage.)

Please remember also that surgery is not a quick fix. There's a recovery and adjustment period, and if you opt for a J-pouch rather than a permanent ileostomy there are two or three surgeries and recovery periods.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 2/10/2009 12:05 PM (GMT -6)   
So sorry your having such a hard time,I had alot of pred and IV steriods,they just did'nt work for me,I've been on Imuran for 16months,and its working ok for me,although I'm not completly in remission its keeping the worst of the UC at bay,and I havent had ny really bad side effects,I would try it first before the remicade,as I think Imuran is quite a cheap drug,although you do need regular blood tests.
I know what it is like to have to consider your family responsiblities,I felt the same as you in the sense that I literally could not be ill with dependants etc,Imuran has done the trick for me for the meantime,like the person before said if you are considering surgery you also have to consider recovery time,and the fact at the end of the day,alot gennarally very safe,etc its still major surgery.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/10/2009 12:08 PM (GMT -6)   
Remicade is a long-term maintenance med, not to be used for a quick fix. If you are wishing for emergency surgery, you would probably be better off opting to have surgery. Yes, there is the downtime to consider, but once you're healed, that's pretty much it. Barring complications.

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


solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 2/10/2009 3:32 PM (GMT -6)   

Thank you so much for your replies.

I really needed to hear from someone, I am very low emotionally no doubt due to the steroids, they make me very weepy.

  • The 2...21/2 hour infusions would not be a problem for me, I would take that time for some spiritual reading or just my own time :)

I am going to do a little research on Imuran.  I have seriously looked into surgery and I have an appointment with a surgeon on Tuesday to ask questions. 

about Imuran, are you able to function normally with this med?  I don't know about other people but Prednisone puts me on the couch, I can do little on this stuff....not a whole lot better than living with the disease, in a different way.

Thanks


45 yrs old. Mom of 3. Youngest child has Down syndrome and husband has Muscular Dystrophy...Stress is a factor for me.
Diagnosed 2001, Ulcerative Pan Colitis. Hospitalized 1 month.  
Symptom free and medication free for 5 years.
Flare October 2007. Asacol 8, 400mg and Salofalk every night.
 

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