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Remicade - who all takes them - and how long before you got any results - what bad reactions

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Ulcerative Colitis
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Posted 10/18/2007 2:23 PM (GMT 0)
okay,  so who all takes this,

it seems that I have read it in several sig lines but everyone else is still on something else.

I know that it can cause bad side affects

Posted 10/18/2007 2:43 PM (GMT 0)
Good post.  I'm about to get Remicade as soon as I determine a location to have it infused.  I'm also interested in any side effects that I should know about in advance...
Posted 10/18/2007 4:09 PM (GMT 0)
I've been on Remicade for about a year, I feel great and haven't had any side effects.
Nathan, you should talk to your GI about getting off Imuran before starting, there have been some fatal cases of Lymphoma in people on Azathioprine and Remicade.
Other than that, those of us on it for the most part feel great!
James
Posted 10/18/2007 4:10 PM (GMT 0)
I've been on Remicade for about five months now and I love it. It's the only thing that got me into remission. I feel normal again - have only one bm a day.  No more prednisone or nightly enemas! I'm once again living life and I've started running, which just would not have been possible before Remicade. I haven't had any side effects. There are risks with everything. 

 

UC really sucks - I didn't know about this website - 2infuse.com - when I was first setting up my remicade infusions but it lists the different places you can have it done if you want to compare prices.

 

Posted 10/18/2007 4:37 PM (GMT 0)
James, I think I heard the same thing, but for some reason my doctor specifically said he wanted me on both at the same time.  From what I remember, he mentioned that many doctors are now using both, with better results.  I'm still going to look into it more before I decide though.  And thanks for the site Scrap.  I went to it and have already called a couple places, though they have to call me back later with more info...hope it doesn't cost too much.  It comes out of my pocket.

Posted 10/18/2007 4:39 PM (GMT 0)
I have heard it is not cheap. I looked up the site and called the number to find out if my insurance will cover it. She is going to find out.

She also told me that some docs do it in their offices now.
Posted 10/18/2007 6:07 PM (GMT 0)
I just got an e-mail from the Remicade maker (Centacor) not too long ago and if I remember right I think you may be eligible for financial assistance if your portion is more than $100 each time. Might check it out. It's very expensive.

Posted 10/18/2007 6:16 PM (GMT 0)
Somebody just called me back from an office here in Orlando, and they charge 120 dollars per infusion, and they will come to my house to do it.  That's alot of money for me right now, but not too bad if the Remicade actually works.  I'll look into the assistance Centocor offers, just incase it ends up being more than what I was told.  At least I'm getting somewhere with all this today.  Thanks again for the help.

Posted 10/18/2007 8:24 PM (GMT 0)
I just had my third infusion five days ago, this one isn't "kicking in" as quick as the other two did, but I have some major stress issues going on right now that can be playing a part. I am still bleeding but it's eased up considerably and I am not feeling as bad as I had been prior to the infusion.

I tolerate the infusions well and haven't had any side effects. It takes 2 to 3 hours, you sit in a nice comfy reclining chair, my infusion clinic has cheerful staff, a TV and iPods on request. I just bring a book and I fell asleep the last time.

My insurance covers it 100%, no copays even.

Meesh
Posted 10/18/2007 10:47 PM (GMT 0)
It isnt cheap, I just got my Medicare statement and it was over 7000.  per infusion.  It has to come down in price - this is nuts!

love to all

bob

Posted 10/19/2007 4:06 AM (GMT 0)
I've been on it for about 18 months now. It works in combination with the other drugs to keep me in remission, but I've tried tapering the Imuran and started having cramping again, so went back to the regular dose. I've had no side effects from the Remicade. Before it, I was steroid-dependent and had all kinds of terrible side effects from that.

And I'm thinking $120 would be the infusion fee, not including the drug, which yes, costs $6000 plus per infusion, depending on your body weight. My doctor's practice has its own infusion center, which is very comfortable and convenient. They have wireless internet, so I take my laptop with me and work while the infusion runs.
Posted 10/19/2007 1:10 PM (GMT 0)
Remi has been wonderful for me. It's given me my life back; I travel, workout, and eat pretty much whatever I want. I haven't had any problems with side effects, and my infusions are down to 1 1/2 hour, every 8 weeks. I do take 100 mg of Imuran per day.
Posted 10/19/2007 4:37 PM (GMT 0)
hello all

Had my first infusion 10-2-07....started to fill better after a week and a half ...second infusion 10-16-07
started flarring and i still flarring today...my next is in 6 weeks ...had it done in the hospital had my own room choice of recliner or bed ... had a TV in the room took 3 hrs ..i have not had any side affects yet...i just hopes it kicks in soon . i have Medicare i dont what it cost yet...all my oral meds i pay 100%..now jan iwill have coverage again  ...good luck to you all
Posted 10/20/2007 6:23 AM (GMT 0)
I read on another post that if you start Remicade - then go off it will not work as well - how do I research that -

Is there something I should ask him about trying before I go that route.

He only has me on what I typed below and that I have only been taking about 3 weeks now - and during that time I have had my monthly female thing and a bad bad cold -

I have not been on any UC meds for almost 1 year, after much reading I am thinking that I had become predinsone dependent - maybe that was part of the reason when I stopped taking it that I was terrified I was going to get sick. I had showed a little improvement with the colazal, but I guess I was not realizing how important it was to stay faithful in taking it every day.

Now I think I just need to be beat for not getting it at first - maybe I would not be wear I am at now
Posted 10/20/2007 3:07 PM (GMT 0)
If you go on Remicade and then off it and try to go on it again you may develop antibodies to it and then it might not work, that's why you go on it and stay on it.
It is REALLY expensive! If I have it at my GIs clinic it's about $5,000, if I have it at the hospital it's over $8,000!!!
Nathan - the reason your GI probably wants you on the imuran is because it will help reduce the chance of building antibodies to the Remicade. From what I understand, the same can be done with Methotrexate, which is what my GI switched me to.
Be sure to ask your GI about that, it just is a major deal to me and has caused me some anxiety problems :(
James
Posted 10/20/2007 4:59 PM (GMT 0)
Ah, so the Imuran will help allow me to go back on the Remicade if I need to stop for a period of time?  Guess that would make sense to stay on it then.  I always worried about that...having to stop the Remicade and go back on it later.  I had read many things about developing antibodies to it once you stop.  Then you can't take it again.

Posted 10/20/2007 7:31 PM (GMT 0)
Hello to everyone, I am new to this site. I am having one of those terrible days, in the bathroom 16 times already. I was diagnosed 10 years ago and went in to remission quickly with a small dose fo Predisone. I came out 1 year ago and been having a terrible time. I am allergic to all 5ASA drugs even rectally. I went on Prenisone July 06 and became steroid depenent. I tapered and ended up ion the hospital  Dec 06 where I stated Remicade. I seemed to do well with the drug until July 07 I had to take an antibodic because for URI and came out of remission on the 7th day. My MD is not sure this is what caused it but I know. Anyway unable to get back in after 2 Remicade treatments. The last treatment was really scarey. I developed joint stiffiness the night of the infusion limiting my ability to move any joint above my waist. The MD tells me the next day that is  a side effect when you build up antibodies to the drug. And it still did nothing for me, Not sure what my next try will be. Any Suggestions? Wish me luck    Carmel

Posted 10/20/2007 7:58 PM (GMT 0)
hey guys

i have had 5 treatments and nothing so far . a little better but not much, the doctor wants me too go on imuram. but im scared crapless about the hair loss 

Posted 10/20/2007 8:57 PM (GMT 0)
Nathan - the imuran isn't so you can go on and off Remicade, it's so you don't build antibodies to it while you're on it. I don't think any dr. will recommend going off it if it works for you.
James
Posted 10/21/2007 1:17 AM (GMT 0)
I have been on Remicade since July 2006. My GI wants me to stay on it for at least 2 years. I started out taking the imfusions at my local hospital which cost $11,000. Now I take it at home from a home health care facility & ut cost $7000. I have no side effects & it really works great for me. I eat about anything I want. I still have urgencies every now & then but only about 2 bm's day or less. I have to take take Tylenol & Benedryl before each infusion to combat an allergic reaction. So I usually sleep through the 2 hour infusion. The nurse works on her paper work while I sleep. I really love taking it at home. I also take Methotrexate & the nurse gives me a dose of solumedral ( I think that is how it is spelled) It is a steroid before each infusion. She commented one time that my GI was going to make sure that I don't have an allergis reaction.

Posted 10/21/2007 2:32 AM (GMT 0)
I've had four infusions so far and I'm still flaring. It definitely helps...within a week of taking it my stools are usually formed, I get more mucous than anything else and my bleeding lightens up to almost nothing. I still have urgency but by bm's are cut down to about 2 or 3 a day instead of 6-7. Unfortunately after about a month I start to slide back into diarrhea, bloody stools, lots of gas pains, the works. This has happened twice now and my GI has yet to consider putting me on the 4 week dosage instead of 8. I'm trying 6mp again after a possible bad reaction to it previously and getting a 2nd opinion at the end of the month...if that doesn't work...<shrug>...I have a surgical consult in November. :(
Posted 10/22/2007 3:23 PM (GMT 0)
I took it about 3 or 4 time and a couple days after the latest, had to go to the after hours clinic because I literally couldn't move. My body froze. Doc on duty called a GI doc, who diagnosed it as temporary arthritis from the Remicade. My GI doc (never told me about this side effect before) said I'm allergic to it and having that reaction just once means I can't try again. I never noticed anything anyway. The only thing that's ever made a drastic dent in my UC was Azulfidine 7 years ago (still on) and of course Prednisone (which I'm fighting my doc about going back on).

On the plus side, I felt like I was on vacation when I got the Remicade. The nurses gave me pillows and blankets, cookies and juice, television, magazines, etc. It was great!
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