In the hospital for the 2nd time in 4 weeks Remicade next step, but I'm nervous!

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/20/2009 2:05 PM (GMT -6)   
I was hospitalized for 2 days in March and I admitted again last Friday hoping to go home tomorrow or Wednesday (another 4 to 5 days).
 
I started flaring in February after being in remission for 4 years. I'm on Apriso, rowasa enemas, and I start taking 40mg of prednisone on March 20th.  I begain to taper 2 weeks ago and was on 30mg when I had to be re-hospitalized.  I was getting worse as I was tapering.  Friday the pain in my stomach was so bad I was sure it was not colitis but a kidney stone.  After they drew labs and did another abdominal CT scan, they said it was still colitis.  Now I am anemic (hemoglobin 9.5 amd hemocrit 28).  They are planning to do a flex sig tomorrow to see what is going on tere and my doctor said based on the results we may start Remicade.  They did a chest x-ray and TB test yesterday.
 
My doctor was initially opposed to Remicade, but now says he is open to it since I have been unresponsive to treatment.  I've been told about needing to stay on Remicade for good because of antibodies, etc., but what if I just want to get into remission and then take the chance of stopping with the mindset being, if I flare again I'll try pred, etc. and if it doesn't work I'll look at humira or surgery in the future as opposed to staying on maintenance therapy with something that is linked to lymphoma and possible infections.
 
Any thoughts?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/20/2009 2:17 PM (GMT -6)   
Wouldn't the risks of Humira be the same as Remicade, just because they are both biologics? Just curious.

Honestly, if it were me, I probably wouldn't stop the Remicade if it works. The increased risk of lymphoma is small enough, for me anway, that I'd rather stay in remission and feel good. Besides, you can look at it that by staying in remission, you're likely decreasing your risk of colon cancer as your colon isn't all inflammed. I know that colon cancer is more easily treated than lymphoma, but still.

Or, you could consider trying a 60mg dose of oral pred or IV steroids, if you haven't gone that route already. My doctor said that sometimes it takes that high of a dose to get the inflammation under control, and as you were in remission for so long with just colazol, I'd probably want to give it a shot if I were you.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg 10mg of Prednisone every other day, Culturelle probiotic, and Zoloft (25 mg).


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/20/2009 2:19 PM (GMT -6)   
I actually think if you're that afraid of the Remicade, you might just want to go ahead and have a surgical opinion now. If you get into remission and then stop the Remicade, you'll likely buy yourself a few more months to plan for surgery, but only you can decide if you need those months enough to take a medication you're afraid of.
Judy
 
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"
 
.


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/20/2009 2:38 PM (GMT -6)   
Ugggh, I would feel the same way if I were you. I don't like the sounds of Remicade, though lots of ppl have called in their miracle drug. I don't even want to take 6mp. Are you going to look into surgery?
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


aned
Regular Member


Date Joined Mar 2009
Total Posts : 105
   Posted 4/20/2009 4:35 PM (GMT -6)   
Bless your heart.  I was hospitalized in March as well and still don't have the flare under control.  I go back for another colonoscopy next week and we will decide on a treatment option then.  I would seriously consider a surgical consult if you are concerned about the biologics.  My doctor said that for a lot of people they are just buying time, with serious side effects, for surgery to be the end result.  Keep us updated on how you are doing.

37 y/o female
non-specific colitis dx. 2007
ulcerative colits dx. 2009
diverticular disease dx. 2009
Asacol-failed
Entocort-failed
Colazal-current, but not working yet


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/20/2009 5:38 PM (GMT -6)   
     Ask your doctor about 6MP first.  I would rather go that route than right into Remicade.  6MP has worked for me.  Good luck and God bless.
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.


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 4/20/2009 5:44 PM (GMT -6)   
It might be buying time, but that works for us. The drug has been studied extensively(for R/A, Psoriasis and Crohns mainly, and while not to be taken lightly if you become one of the statistics, it is liquid gold for some. A few more years with a functioning colon might be worth it. My daughter is only 15, so that clouds my judgment a bit. There are some unknowns, and surgery is not the end of the world, but it ALSO has risks and a down side. We are using this time of relative "health" to study and learn. I dread the day that it might stop working. This is a good place for you to do that do. You have 11,0000 more posts to read! Smiles, Katmom
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 4/20/2009 6:19 PM (GMT -6)   
I have been on Remicade for a couple of years now. While I did see an improvement after my very first infusion, it took about a year for me to achieve remission. I have had no ill effects from the infusions to date. I do not feel tired after them as some people here have reported. I AM somewhat nervous about being on this drug "forever." In reality as long as my insurance will cover it, as long as I have this insurance, as long as my husband's company provides it ... you get the drill. Aside from the financial cost, I don't like being on such a powerful drug. But, that said, it WORKS for me.

I am currently saving as much money as I can so I can afford to close my business down for a couple of months to recover and then have money to cover us while I rebuild my business after -- I intend to have my colon out and get the jpouch surgery at some point, but the Remicade has definitely bought me some time. about a year and a half ago I was in a really bad way, had lost a lot of weight, was severely anemic, could barely get through my day. The Remicade gave me my life back.

If you decide to try the Remicade, just be sure to bring enough things to the infusion center to keep you busy for about three hours. I bring my Zune mp3 player and listen or watch podcasts, I read, I work on needlepoint projects, I nap. I don't mind the infusion time at all, the nurses are nice and I feel a lot better within a few days of having the infusion. I go every six weeks, the usual timing is eight weeks.

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

14 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 3/14/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/20/2009 6:39 PM (GMT -6)   
I've actually been on Remicade for a 3 years with no problems and no flares, but I don't recommend anyone take a drug that frightens them. We're all different. I'm hoping the Remi holds me until the next new treatment comes along.

I listen to my ipod, read and nap during my infusion.
Judy
 
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"
 
.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/20/2009 6:50 PM (GMT -6)   
Humira & Remicade are basically the same drugs, re. lymphoma risks, side effects, etc. So you're reasoning on one being safer than the other isn't sound. I've been on Remicade for a little over 2 years, & it's been alright- some bad, mostly pretty good. If you get into remission with it, then stop taking it, chances are you'll flare again pretty quick. So why bother with it in the first place? It is definitely buying time for most of us, & I suppose we figure the possible complications are worth it- if I happen to come down with lymphoma one day, ask me again! Truly, how can anyone weigh the risks vs. benefits of a drug like this? you just get so sick that you're willing to try anything. So you take the Remicade, & hopefully it works well- then there's no way you can talk yourself into getting off it, even knowing the possible side effects. I would talk it over with your GI, tell him/her your fears & your plan of using Remicade as a vehicle to get into remission, see what they have to say. It's such an individual choice, it's very hard to advise on this, I find... I don't think anyone really thinks it thru- of course any sane person would say "Hell, NO!! I'm not taking something that risky!". But like I said, you're just so sick when you decide to go on it... you're not thinking clearly. And then you're so psyched if it works, you say "Hell, NO! I'm never going off it!". I won't lie, for me it's a time buying thing. Either something else will be approved, or I'll wind up in surgery.

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


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 4/21/2009 8:43 AM (GMT -6)   
I've been on Remicade for about 4 years now; I haven't had any side effects and feel better than ever. My husband takes more meds than I do...and last night he told me that I look healthier than I ever have. That's because I'm able to function again -- workout and take care of my body and eat the right balance of foods. So, I look at it this way; I could be on all sorts of meds for a variety of other ailments, or one big one to help me live my life the best I can. But that's my thinking....everyone is different!

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 

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