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Remicade- how long did it help you?

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Crohn's Disease
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Posted 9/18/2009 3:56 PM (GMT 0)
I am probably going to drive myself crazy reading up on how others respond to different drugs, but I get a little concerned when I read about how people get on Remicade, it works great, and then it stops working, or they develop an allergic reaction to it. I just have a few questions if you have had experience with it-

1. How long did you use it until it didn't seem effective anymore?
2. What signs did you have that it wasn't as effective and when did they happen? Did you feel back to normal after your following infusion?
3. For those with allergic reactions- do those happen while you are getting the infusion?

Any input is appreciated. I have found it was a "miracle" drug for me, but I've read that it was for other people, but then it stopped working for them.
Posted 9/18/2009 5:49 PM (GMT 0)
#1...I'm still going strong! Dec. will be 5 years for me!
#2...We have upped my dose (to 700mg, I think) and still keep it at every 8 weeks.

Good luck!
Posted 9/18/2009 7:43 PM (GMT 0)
I was on Remicade like 9 years ago.  I had 3 infussions and within like a day or two of the 3rd one I had a reaction and landed a week in the hospital.  It dropped my white cell count down like way low.  I was super sick from it and it took about 5 days to get me back up and running. 
Posted 9/19/2009 1:53 AM (GMT 0)
It was the most helpful medication for me for almost two years, until I devleoped drug-induced Lupus and had to stop taking it.
Posted 9/19/2009 2:18 AM (GMT 0)
My husband has been on it since April 08, so almost 1.5 years. He has some infusion reaction (flu like symptoms, and joint pain, which go away in about 24 hours, and are made better with some pre-medication with benedryl and solumedrol), but other than that, nothing else so far. Keeping fingers crossed that it'll keep him healthy for a long time.
Posted 9/19/2009 3:46 AM (GMT 0)

It worked great for me for 2 years. I honestly was symptom free.

After 2 years, we started to bump it to 4 weeks instead of 8 or 12. Then, my symptoms kept getting worse... I had my infusion and started to have issues breathing. Nurse slowed it way down, gave me some Benadryl, and we finished it. It almost seemed like it did nothing for me.

about 2 weeks later, I was sicker than a dog and thought I had the flu! This went one for over a week before a colleague made me see her PCP (I didn't have one) who promptly admitted me to the hospital. Evidently I was flaring and didn't recognize the symptoms.

They did a Remicade infusion in the hospital and I reacted to that one - couldn't breathe, blood pressure went way up, face/chest was flushed, etc. The hospital assigned GI said I had built antibodies to the Remicade, evidently, which is why we kept having to bump the dosage, why  I was now flaring, and why I was reacting.

So, they pulled me off it. It was a fantastic drug while it lasted. Now that I know my disease better, I can catch myself before I flare that badly again. For instance - I went from Remicade to Humira. Humira has stopped working and I caught it before my flare was out of control. I'm now on Cimzia.

Posted 9/19/2009 4:00 AM (GMT 0)
I've been on Remicade for a little over 3 years now. The biggest problem I've ever had is them not finding a vein, but that's not often. Usually I'm pretty tired the next day - but no aches, pains, etc.
I can, however, tell when I'm running low on it, like a few days before the next treatment. I get really tired and really cranky and people stay away from me ... smilewinkgrin
I've been in nearly complete remission for a couple of years now, with only occasional minor flareups - life is good. :-)
Posted 9/19/2009 6:51 AM (GMT 0)
I just started my Remicade: I go for my 5th infusion in October. I am not sure if it is working for me, however I am experiencing internal rectum pain: I think its fistulas or fissures so its hard to tell ... I have no colon so food whistles thru me like crazie :o/ they are thinking they might have to increase my dose to 1 a mth instead of every 8 wks. I don't want to give up on the drug yet, i am crossing my fingers. i am worried what it may do to my health when i get older. and yes its hard to find my veins also. often i feel nausea and sleepy and weak when i get it. hopfully it will prove to be the golden drug for me too!
i think it is just like any other "new" medicine out there, it reacts differently for people. but it sure is $$pricy - make sure your health care is good!
All the best!
c.sofee
Posted 9/19/2009 3:38 PM (GMT 0)
1. I started losing response after about 6 months and had to increase the frequency of the treatments. 

2. I could tell that the treatments would wear off a few weeks before I was due for another treatment.  Normal symptoms returned for those last few weeks as if I had not received the treatment in the first place.  Increasing the frequency helped for a while but then too seemed to lose response and started having allergic reactions, which brings me to #3.

3. My allergic reactions would happen about 15 minutes into the infusion and we would be unable to continue with the treatment (watching the nurse pour the rest of the bag down the drain was devistating).  Once we progressed to being in the hospital and having 19 hour infusions instead of the normal 2 hours, it took a few hours for the reactions to happen, since the drug was being administered much more slowly.

Posted 9/22/2009 4:16 PM (GMT 0)
I am at just over 8 years.
Posted 9/22/2009 4:19 PM (GMT 0)
Red:

In the 8 years you've been on remicade, have you had a flare? If you have, how did you treat them? With short term steroids? Were the flares much milder than before the remicade?

Thanks for the insight.
PV
Posted 9/22/2009 7:45 PM (GMT 0)
I tend to have minor flares just before each infusion. I have it arranged to have my monthly cycle onces every 8 weeks. I have it the week before my treatment because for me my hormones pull me out of remission so this way I have one week out of remission and then by then end of the next week (since my infusions are on Tuesdays) I am working on getting back under control. I just watch my stress and diet during this couple of weeks. I have had to have my dosage upped to the max and I take imuran to extend the life of the cade. Right now I am in a place I did not expect to get to for a couple more years. And we are working to get me out of this flare. I just had the imuran upped to 150mg from 100, and I am on the max dose of Entocort right now. I cannot take pred anymore - makes me nuts. I consider myself in a medically induced remission. Which means if my meds stop working I will come out of remission.

But you see I am at a different place than a lot of the people I read here on the board and I know there is no magic pill and I shoot for quality of life. I work everyday. I take care of my 10 year old daughter, and my husband is much sicker than I am at this time. So I have a full plate and I just remember that it could always be worse. I really believe that attitude is everything with this and if we can find something to be happy about every day no matter how small then we will survive with our sanity. There are days when it is very difficult to find that small thing to be happy about, but I make sure I find it. Sometimes it is as small as watching the hummingbirds in the flowers on the walk to my office first thing in the morning. But anything that a person can find to make them smile even for 10 seconds is worth the effort.
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