Crohn's symptoms, is Remicade working?

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kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 6/27/2008 5:52 PM (GMT -6)   
Hi Everyone,
I feel like I only post when I have issues. I LOVE reading and learning and I hope this hasn't been posted. I checked the remicade thread, but didn't find what I was looking for, so here it goes. I have had three remicade treatments. I am five weeks out of my third treatment. My dr agreed to let me get treatment every six weeks because I am so miserable. Remi worked instantly for me and it was the only thing that has made me feel better. My only problem is that four weeks after my last treatment I am fatigued all the time, nauseous (spelled wrong I know), and my D is out of control to where I can't leave the house without a change of clothes. These are totally crohn's symptoms. Is that normal? Do I need to give the remi more time? I started treatment in April and at least now I can function, but I don't want to just function I want to enjoy my life. So I guess my question is, Will the remicade start to work for longer periods of time the longer I am on it? I have an infusion next Wed. and I am really excited. The good thing about the nausea is I eat less and I have about 100 lbs to lose from being on Pred so long. I am not sick enough to go back on the Pred. Let me know what you think.
Thanks,
Kgirlie
Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 10 mg/day, Wellbutrin 150 mg/day, Remicade, topamax, nadalol, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 10 months.  


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/27/2008 6:39 PM (GMT -6)   
I would think it should be holding you a little longer. I know that some here have said their doctors upped their dosage of the Remicade and that seemed to help. Maybe ask your doctor if that's possible with you?? I hope you feel better!!
I was on Remi several years ago and I landed in the hospital due to a side effect. So I can't take it anymore.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 25mg tapering
                           Methotrexate injection 12wks
                           Folic Acid
                           Wellbutrin
No Surgeries
 


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 716
   Posted 6/27/2008 8:58 PM (GMT -6)   
Kgirlie,

Sorry to hear about what you are going though. I've been on Remicade since 2002 and and it has worked well most of the time. I was on it for about 2 years and I had a big flare. My GI bumped my dosage from 400mg to 1000mg and that has worked very well ever since. Depending on how I am doing I can vary my time between infusions from 6 to 8 weeks. I think I even did 9 weeks once. It is normal for me to see Crohn's symptoms start to kick up as I get closer to my infusion time. Depending on the severity I'll adjust the time between infusion to suit. Don't necessarily let your doctor decide when to do them, if you think you need them sooner, let him know. Keep in mind that it isn't a cure. I know you know that, but sometimes we forget. Remicade works very well for some of us, but it doesn't take care of all the symptoms all the time. It's pretty normal to see the symptoms creeping in from time to time, just think of it as a reminder.

The "normal", if there is such a thing, dosing for Remicade is an infusion, 2 weeks later another one, 4 weeks later another, then into a 6 to 8 week schedule. This is often called a "loading" dose as it builds up the amount of Remicade in your system quickly, then the 6 to 8 week schedule keeps it maintained. I don't know if they did this with you, but if they didn't, you could not have enough in your system yet. Also, I was told that it "normally" takes at minimum 3 infusions to really start seeing the results. So, you might have to wait a bit longer. You didn't mention the dose you were on, but there are a number of schools on this. I started off at a low 400mg dose, and that worked well for a while. I started to have more and more problems and finally a big flare. I ended up back in the hospital and the GI was getting ready for surgery. After a bit I started to improve, and he called it off. He bumped the infusion dose to 1000mg and that has worked ever since. You might want to talk with your GI about this, could be that you just need a higher dose to maintain you, as it sounds like it is working, just not long enough. Of course take all I say with a grain of salt as I'm not a doctor, just someone with a bit of a personal experience. As with everything, your mileage may vary....


Also, What other medications are you taking? I take 6mp every day along with the Remicade. It's apparently common to use the two drugs in tandem. It isn't always 6mp though, some use Methotrexate, and I think there are some others. When I first started on Remicade, the GI put me on 100mg of 6mp every day. The 6mp made me so tired. I'd have a hard time getting up in the morning. I'd make it to work, but sleep through lunch. I'd barely make it home and fall asleep on the couch. My wife would wake me up for dinner, and then I'd go back to sleep. I'd do this all week, and then crash on the weekend. This went on for a few months. Finally I'd had enough and I pleaded with the GI to lower my dose. He wasn't really recommending it, but I couldn't function. We, he cut me back to 50mg a day, and everything improved. I got my energy back and I didn't sleep all the time. It still makes me a bit tired at times, but it's not really that noticeable. It is common for those types of drugs to do that though. So, if you are taking one of them along with the Remicade, that *could* be the cause. Again, talk with your GI before changing your medication doses.

I hope that helps. I don't get on the board very often, but when I do I usually look for posts regarding Remicade. I've been on it long enough that I've learned a bit about it. I really think it is my wonder drug. That, and I've really come to love my RN that does the infusions. I get the same one every time (she requests me and I request her) and we've been doing the infusions together for years. I really look forward to my time with "my RN".

Hang in there, I hope things improve for you.
Matthew McKenna,

"I'm just along for the ride."

Post Edited (mmckenna) : 6/27/2008 8:01:48 PM (GMT-6)


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 6/28/2008 12:00 AM (GMT -6)   

Thanks for the advice. Matthew- You had a lot of good things to tell me that I didn't know. I am only on remi right now. I stopped prednisone a week ago. I am not on 6mp because my dr didn't know if it was safe for pregnancy and I wasn't ready to be done having a family so young, so he just put me on the remicade. I notice you on the board and I want to thank you for taking the time to be so clear. I have had the three loading doses and next week will put me at 6 weeks from my third dose. I think I am on 500 or 600 mg of the medication. I am a big girl so I know my RN gives me more due to my weight. I will see how this infusion goes and hopefully it will get me to six weeks, if not I'll ask them about upping the dose. I am trying mightily to avoid surgery and every time my symptoms return I get scared that that is what I am looking at. It feels reassuring talking with people on my same medication and someone that is experienced. I too love my RN and have really enjoyed our time together. My next struggle is my boss. She hassles me when I take time off for my infusion, but I can only get them on a Wed, Thurs, or Fri. She will have to get over it because I know remi is my wonder drug. It is giving me my life back.

Thanks,

Kgirlie


Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 10 mg/day, Wellbutrin 150 mg/day, Remicade, topamax, nadalol, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 10 months.  


sissypooh4
New Member


Date Joined Mar 2006
Total Posts : 4
   Posted 6/28/2008 5:43 AM (GMT -6)   
Well, I was on Remicade for some time, had like 17 of them and around #14 it just was not helping. Took like 5 day's after my treatment for it to kick in, and then about 4 week's after I felt like crap.(and that I did alot of, was getting Remicade every 6 week's). My doc just started me on Humira. (Humira is like Remicade but you give it to yourself with a shot pen, no running to get IV juice). Went to the office to learn how to give them to myself. (first time you have to have 4, look's like an ink pen and you give it to yourself in the belly or in the top part of your leg's.) Humira is in prefilled Pens and is very easy to us, if you can stand a bee sting...? Well that's what it fills like and when you take it you just count to 10 and you are done. So for I had 4 shoot's in the office and then I get 1 shoot every 14 day's. (gave 2 so far on my own). Humira is like Remicade (it's a adalimumab) but it's anti-body's are human.... Not like the Remicade. (hope every one know's what kind of anti-body's are in Remicade). Give the Remicade some time, see if it will work for you. Remember that every one's body is different and if something might work for one? Does not mean it will work for another. Remocade stoped working for me, so for now I will have to give Humira a try.

Good luck
PROUD MARINE MOM Jenny

mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 716
   Posted 6/28/2008 8:23 AM (GMT -6)   
Well, I'm 6'4" and 245lbs. 1000mg is considered a "double dose". I originally started off at 400mg. Might be worth talking to the GI about reviewing your dosage. Also, since you are just off the prednisone, could be just the shock from that. As much as we all hate pred, it does work well, it's just the side affects that are so terrible.

I understand the concern over pregnancy and 6mp. Between Remicade and 6mp, 6mp is probably the worst of the two. My wife and I were trying to get pregnant at the time I first went on it, and I was concerned about it. Turns out that wasn't an issue as there were other problems preventing us from getting pregnant. We finally adopted and I got a vasectomy. Could be that you need the double whammy of the two drugs though. Sorry to hear that a decision like that has to be made. Putting family first is important, but don't overlook your own health. I can't imagine anything worse that having Crohn's and being a mom. My hat is off to you.

Sissy is right on, Remicade doesn't work for everyone. Humira might be a good option. Also these drugs, often called "the -mabs" are pretty new, and there are new versions coming out all the time. If Remicade isn't the one, there are at least two others, Humira and Cimzia that are already approved. I did hear in a patient symposium late last year that there are several more that are nearing the approval stage.
Matthew McKenna,

"I'm just along for the ride."


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1692
   Posted 6/28/2008 10:04 AM (GMT -6)   
Remicade might not be enough to hold you. I was in your shoes a few years back and my GI put me on 6mp AND remicade. That seemed to really do well for me. Congrats on your pregnancy. Here's what I can tell you about 6mp and pregnancy - I've never taken it while pregnant, but.... I had a GI in Miami who was part of a BIG research team and he was INSISTANT that I stay on 6mp while pregnant. He did not want to rock the boat. He explained to me that the latest research shows that women who take 6mp during pregnancy have NO GREATER INCIDENCE of birth defects/problems than women who don't take it. So, while it was once considered to be a definite no-no, it is proving itself to be "safe" enough. If your GI can get some information he will be able to find that out. I don't know if 6mp is the best thing for you, but that should at least comfort you a bit, if you think you need something besides remicade. I know how tough it is to be pregnant and worry that you need more meds. I'm 13 weeks pregnant right now with #3 and I'm flaring and it sucks. So, hang in there and if your GI doesn't know enough, ask him to consult with someone who does, and if he won't do that, maybe you can find a doc who is "in the know".

kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 6/28/2008 4:52 PM (GMT -6)   

Thanks for the info. It was again, great info and it really has me think about my options. I think I will give it more time and see how I feel. I will start marking when my symptoms come back so I have something to give to my dr. I didn't kinow they could give a double dose, so I will definately keep that in mind if upping it to six weeks doesn't work alone. I want to send my insurance company a Thank You note because without their approval I wouldn't be able to be in remicade. I am coming to the conclusion that my family may be complete, which would be fine because I have a beautiful son and daughter. I just never thought my body would fight me so hard at so young. I am trying to get to where I can work part time because full time is a killer. I am so glad I have HW. You have all made me feel better and knowing to give the remi more time is  reassuring, even though that's what my dr said too. I love learning more and more about CD and remicade. I will keep studying and asking my questions.

Thanks,

Kgirlie


Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 10 mg/day, Wellbutrin 150 mg/day, Remicade, topamax, nadalol, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 10 months.  

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