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

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Ulcerative Colitis
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Posted 4/20/2009 7:05 PM (GMT 0)
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?

Posted 4/20/2009 7:17 PM (GMT 0)
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.
Posted 4/20/2009 7:19 PM (GMT 0)
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.
Posted 4/20/2009 7:38 PM (GMT 0)
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?
Posted 4/20/2009 9:35 PM (GMT 0)
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.

Posted 4/20/2009 10:38 PM (GMT 0)
     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.
Posted 4/20/2009 10:44 PM (GMT 0)
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
Posted 4/20/2009 11:19 PM (GMT 0)
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
Posted 4/20/2009 11:39 PM (GMT 0)
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.
Posted 4/20/2009 11:50 PM (GMT 0)
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.

Posted 4/21/2009 1:43 PM (GMT 0)
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!

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