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Remicade....?

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Crohn's Disease
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Posted 5/11/2010 2:23 AM (GMT 0)
Hi folks, I need some feedback if possible.

So I've been floating along after my hospital stay almost 2 months ago. I've been on Prednisone since the hospital. Every time they have tried to taper me down, I start getting symptoms again around 10 mg, even worse at 5 mg, and can't leave the house once off completely. The last time I got completely tapered off (about 2 weeks ago), I was going 15+ times a day again. Needless to say, my GI put me back on immediately.

I saw him today, and he's toying with the idea of putting me on Remicade. I'm not sure how I feel about this, as I'm not even officially diagnosed with Crohn's or UC. However, I know I can't stay on Prednisone forever, and it sounded like my GI was hopeful that he could get a few Remicade infusions into me and be able to get me off the Prednisone. Right now I'm technically diagnosed as 'chronic active colitis', which means I get all the lovely symptoms, but don't neatly fit into any of the major colitis categories. I flare like a Crohn's or UC patient, and my bloodwork represents some sort of IBD.

I guess my question is, would you give the Remicade a shot if you were in my shoes? I guess I feel kind of odd going for a last resort medication with no 'real' diagnosis, but I'm not sure I have much choice at this point. Any thoughts for me? I'd appreciate it. :D
Posted 5/11/2010 2:38 AM (GMT 0)
If it were me I'd avoid Remicade for as long as possible. Once you're on it, you can't come off of it and then restart later, so it's a life decision. I would probably try to find other avenues of maintenance meds before going that route.
Posted 5/11/2010 4:55 AM (GMT 0)
Just do it
Posted 5/11/2010 12:09 PM (GMT 0)

I think you should wait on the Remicade, especially since you don't know what you have yet.  There are a number of meds out there to try before Remi.  Have you tried 6mp yet.  It is another big drug but I would recommend that before Remicade.

Also, have you tried taking Immodium yet.  I know it sounds weird but it can help.  I have been using it when in a flare and it makes a difference.

Posted 5/11/2010 12:18 PM (GMT 0)
It is hard to say with out a diagnosis. But you have debilitating symptoms and are steroid dependent. I was on pred for over a year and every time I tried to taper down, I would flare. Remicade allowed me to get off and stay off pred. It worked like a miracle drug for almost a year. Then I built up antibodies and it became less effective. I am going to start humira on the 25th and hoping it will work for me. I would try it and see how you feel when you try to taper off pred with the remicade. Good luck
Posted 5/11/2010 12:44 PM (GMT 0)
Thank you all for the thoughts. Almost30, that's exactly how my GI feels - I don't have a concrete Crohn's or UC diagnosis, yet my symptoms behave exactly like an IBD. As he put it, you're miserable almost all of the time and we can't get you off prednisone right now, so something needs to give.

JavaJay, I actually take Lomotil as needed to control symptoms, but it only does so much, sadly. :(

I really appreciate all the input.....at this point I'm thinking I may as well try it. I'm so tired of feeling so badly. :( I don't know. I miss so much work right now as it is and can barely keep up with my toddler, and it's just killing me.
Posted 5/11/2010 2:31 PM (GMT 0)
nono     First I have to say I havent been around here in about a year, need to catch up.

Anyway, I would go for the remicade, I was in the er multiple times a week, and admitteed no more then every 3 weeks, and I tell you I was sick, down to 96 pounds, remicade raised my weight up to an unbelievable 160.

Also, YOU CAN start and then stop remicade. the only problem is before getting it theyd want you to take a benedryl , aspirin, and about 40 to 60mg of prednisone, and with that they havent hadnt had a problem. Dont believe everything you hear....hint hint

Posted 5/11/2010 2:43 PM (GMT 0)
Not every place makes you take something before the remicade.  I have been on Remi since October, never had a reaction and have never taken anything beforehand.  That was my big worry since Benidryl knocks me out but luckily I haven't needed anything.  I like this way better because I don't like to put in any meds if I don't need to because I have a habit of building an immunity to them.

Posted 5/11/2010 8:36 PM (GMT 0)
I still don't have a diagnosis - but I was unable to come off prednisone. Everytime I tried it landed me back in the hospital. After accidently being given a huge dose of Aspirin in my IV, I was essentially forced to give Remicade a shot. It has worked wonders for me, despite at times I feel a bit over-treated. I was so sick I was getting continuous blood transfusion and I found I was allergic to mesalamines and didn't have time to wait for 6MP to kick in. My OBGYN was  actually more comfortable with me getting the Remicade than the 6MP. I have now been on it a year and have no problems or diet restrictions. Hope this helps!
Posted 5/12/2010 1:14 AM (GMT 0)
Tsitodawg,

That's great that you were able to go back on it. Unfortunately, I wasn't. I wasn't even an hour into it before I had tightness in my chest, trouble breathing, and I got really hot. So no more Remi for me. My insurance had approved it, as I've had a solid diagnosis for 4 1/2 years. But then thanks to my terrible job, I lost my good insurance and have been forced onto a limited plan that doesn't cover a whole lot. So until I get new insurance, anything that pricey for me is out of the question anyway.

At this point I don't need to be on anything that strong anyway, as long as I'm a good little patient and stay on my meds.
Posted 5/12/2010 2:40 PM (GMT 0)

DancrAlwaz said...
Tsitodawg,

That's great that you were able to go back on it. Unfortunately, I wasn't. I wasn't even an hour into it before I had tightness in my chest, trouble breathing, and I got really hot. So no more Remi for me. My insurance had approved it, as I've had a solid diagnosis for 4 1/2 years. But then thanks to my terrible job, I lost my good insurance and have been forced onto a limited plan that doesn't cover a whole lot. So until I get new insurance, anything that pricey for me is out of the question anyway.

At this point I don't need to be on anything that strong anyway, as long as I'm a good little patient and stay on my meds.

If you're still on 60mg of prednisone you do in fact need something that strong...
Posted 5/12/2010 3:27 PM (GMT 0)
Jas, that's about where I'm sitting right now. Ever since my hospital trip, as soon as I get under about 10 mg prednisone, I start going 15-20 times a day again, which eventually degenerates into all mucus and blood. They haven't readmitted me to the hospital yet, although I think my doc would have liked to a few weeks ago. :(

I really appreciate all the feedback and information from everyone....I think I'm going to give it a try if my insurance will go for it. My GI seems to feel very strongly that this is what I need at this point, so......
Posted 5/13/2010 12:15 AM (GMT 0)
leysa,

I really hope it works for you! My body does not tolerate medicine very well (I discovered after I got sick I'm allergic to most medicines) but I could tell there was improvement within days of my second Remicade infusion. I did experience a few minor things like a cough and rash, but I would take that any day over being saturated with Prednisone and weighing 80 pounds. I had been on prednisone for 6 months at 60 mg/day unable to ever taper below 20 mg. However, 6 weeks after my first infusion I was completely tapered off steroids. Remicade works differently for everyone but I'm hopeful it will give bring you some relief!
Posted 5/13/2010 12:15 AM (GMT 0)
leysa,

I really hope it works for you! My body does not tolerate medicine very well (I discovered after I got sick I'm allergic to most medicines) but I could tell there was improvement within days of my second Remicade infusion. I did experience a few minor things like a cough and rash, but I would take that any day over being saturated with Prednisone and weighing 80 pounds. I had been on prednisone for 6 months at 60 mg/day unable to ever taper below 20 mg. However, 6 weeks after my first infusion I was completely tapered off steroids. Remicade works differently for everyone but I'm hopeful it will give bring you some relief!
Posted 5/13/2010 12:22 AM (GMT 0)
I am due to start Remicade on Monday as well, I am quite worried about it due to the possible side effects but my GI thinks that this is definitely the way to go. Hopefully it works out for me and you both!
Posted 5/14/2010 1:44 PM (GMT 0)
Hello all,

I have been on remicade since last october, but the effects of remi have started to wear-off for me, I was one it once every 8 weeks, now I am on it every 6 weeks, my next dose is in June. But I am realizing that it does not last very long for me, the effects wear-off within about 2 weeks or so. I have asked my doc to move it 4 or 5 weeks, but he is against because believes that it is a strong drug and it has other implications for the body and he would not go that often. At least he is not comfortable making that move yet. I am also pred dependent, symptoms coming full-force if I drop-below 5 mg. So I sort hover around 5 mg to 10 mg, without the combination of these two drugs, I would not be able to lead a normal life. I am also on pentasa, but I don't think it does anything for me. My goal is to stay on remi as long as possible and hope new drug discoveries come along in the next five to 10 yrs. I believe there at least 10 different drugs that will the hit market within the next decade. So maybe something will work for us. Then there is always surgery (not cure) but a temp solution.

Oh, by the way, they pre treat me with 25mg of Benadryl and 500 mg of tylenol, and I take anywhere between 5-10 mg of pred before getting my remi infusion.
Posted 5/15/2010 1:19 AM (GMT 0)
i have my 3rd infusion on Monday...i'm really hoping this stuff kicks in...it hasn't really done anything that i've noticed yet...even had to ramp up my prednisone for the past couple of weeks. and to top it all off i'm sitting here with another &^%$%^&^& kidney stone right now!! ouch!
Posted 5/17/2010 10:42 PM (GMT 0)
Hi guys, just got back from my first Remicade infusion, things went well, I don't feel any effects really except that I am a bit tired. tsitodawg thank you for your message, the reason that I was more worried about taking remicade than usual was because for the past 2 months I have hardly had any symptoms at all except for occasional fatigue and I was wondering why i needed to even get Remicade but my doc says that my CT scan showed extensive inflammation and it is normal for you to not get any symptoms even tho you have inflammation so I had to take his word for it and had my first infusion today. Hopefully it works for me and I do not develop any short or long term side ffects, I also hope that it works for the rest of you who are taking it.
Posted 5/22/2010 2:53 AM (GMT 0)
Well, I'm officially scheduled for my first infusion on Monday. I hope I'm doing the right thing and it helps me some.

*nervous*
Posted 5/22/2010 4:59 AM (GMT 0)
I had 4 glorious years on Remicade ...wish I appreciated them more .... was great .... I ate everything I wanted .... sooooo you go for it .... and enjoy it as long as it lasts !!!!!  :-)
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