when Remicade wore off, how long after your infusion did it work again

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Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 1/27/2010 9:45 AM (GMT -7)   
For those of you who are or were on Remi, once you had a flare, when you got your next infusion, how long after did it take to work? Or did it work at all?

I'm in a flare and was at every 8 weeks but my GI bumped it to every 6 weeks. I had my infusion yesterday, and I'm wondering when I may see improvement (if I do). I know it's different for everyone.

I'm scared, because I've read that if you are on Remi and it stops working, Humira probably won't work for you either. :( I was diagnosed 6 months ago and wishfully thought I wouldn't flare for a long time after I was in remission. What happens if nothing works for you...

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/27/2010 9:58 AM (GMT -7)   
It always seemed to kick in for me on the third day. I quit to try Humira then when I went back to Remicade, I had an allergic reaction on my second re-induction infusion and then it just didn't work at all. But that's because I quit to try Humira. At the time I thought I had no choice since insurance wouldn't cover infusions more closely than every 6.5 weeks. In hindsight, I wish I'd have paid one infusion out of pocket to get that timeframe down and used Remicade for a longer time.

Anyway, as long as I stayed on the Remicade, it would help on the third day. So hopefully yours will kick in too. It's great that your doctor and insurance are supportive of infusions every 6 weeks! I hope it helps you. the fevers are so hard to put up with I know. And, it is so hard to stay hydrated. Hang in there... I'll keep my fingers crossed that the Remicade kicks in and helps you stay out of the hospital!!! Hugs!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


straydog
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Date Joined Feb 2003
Total Posts : 13481
   Posted 1/27/2010 10:08 AM (GMT -7)   
I did my infusions every 4 weeks and if I had a flare going on it usually was 3-4 days before it kicked in for me. I stopped Remicade a year ago because it induced Lupus. I am now on Humira and love it. It is working better for me than the Remicade and my dr really thinks I built up antibodies to the Remicade. My dr this past year switched almost all of his patients to Humira because its seems to be working better than Remicade does. Centocor also has a patient assistance program of different types and they will help with co-pays if you qualify.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 1/27/2010 10:11 AM (GMT -7)   
Thanks so much, sr5599. I am seriously teary-eyed right now. I appreciate your kindness. I'm sorry the shorter time between was not covered by your insurance. I do feel really lucky in that respect. How is the Cimzia working for you.

Gosh, this disease is really scary. I don't know how you all have gotten through this for so long. I feel like I'm going to have a mental breakdown. I just have all these thoughts racing through my head like what if I lose my job and then my insurance? What if I can't ever get back in to remission? I don't feel like I'm strong enough to make it through this, how the heck do you guys do it? Sorry, normally I can tough things out, but today I am feeling vulnerable. I don't want to be a burden to my husband.

I also am having a hard time not getting upset with friends who know that I am sick yet don't ask how I'm doing, or they complain to me about a headache and tell me they're "falling apart". Seriously, I would never say that to someone I knew had a chronic disease, but I guess that's me.

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 1/27/2010 10:13 AM (GMT -7)   
Straydog, I'm so happy to hear the Humira is working well for you. I am hoping that the Remicade kicks in, but if it doesn't hopefully there is hope for me on Humira. I'm so sorry you had to deal with the Remicade induced Lupus. Hopefully all the symptoms went away once you got off it.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 1/27/2010 10:26 AM (GMT -7)   
Thanks Octobergirl, my rheumatologist has me on meds for the Lupus as Humira can do the very same thing. Gripes me because we try to battle one thing and end up with something extra to deal with. Hopefully you will get some relief soon. I did ok with Remicade but the longer I was on it the less effective it became. I was on it almost 4 yrs. I went off of it and then developed a fistula so back on it again and thats when the problems really came to surface. I knew my symptoms were a lot more than the usual Remicade side effects, totally different. I actually went off of it twice. I always received pre-meds because of a severe reaction during the initial dosing and never had problems resuming it either time.

Good luck hope you feel better soon.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 2/8/2010 12:21 PM (GMT -7)   
Folks,

I have been away for sometime traveling and dealing with the birth of new baby (in NICU now), more about that later.

I started remi last october, I had two initial loading doses and then another dose after thanksgiving and the fourth dose in January. I had one major flare in early Jan, had to bump my pred to 20 mg, tapered down took the 4th dose. I am flaring now as we speak, bumped the pred to 15 mg and my gut is not settling down at all. In my case, it abdominal pain and it is bad. So, I have been talking to doctor to see if they will bump my dosage or space it more closely 6 weeks maybe, we will see what happens. will have to wait until March to find out. Meanwhile, all my attempts at weaning away from prednisone has failed. As a result I have full-blown osteoporosis. Only thing that is working for me is my Pred, so I am at a loss as what to do. I was hoping to be remi for a long time, and waited a long time to get there. But I am finding out that it is not all effective in some cases. CD is bad, bad...thing.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 2/8/2010 10:48 PM (GMT -7)   
scoolOctobergirl. It helps to keep your head not thinking about the past or the future.confused Usually thoughts about the past involve regrets and resentments, you can't change the past so why dwell on it? As for the future, for a cronic illness patient it's full of fear.smhair Fear of progressing disease, of jobs, of money etc. ect. ect. I try my best to just stay in today and do whatever I can, just for today. Leave tomorrow for tomorrow. When you wake in the morning, tomorrow is today and you just do what you can for today. It really helps if you work at it. It helps you keep a healthy mindset. Robsmilewinkgrin

Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 2/10/2010 7:46 PM (GMT -7)   
I just found out today that Remicaide doesn't work for me - my old dr never did blood work to see if I was building up any sort of antibodies against it.  After only 5 weeks there is no trace of it in my system, and it should be detectable until the standard 8 weeks I guess. 
 
I am starting Humira, where did you hear that that might not work if Remicaide doesn't?  I am still having a flare (since late Nov) and although it's not as bad as it has been in the past, it's still not normal.  I had a sigmoidoscopy and saw the pics and it looks terrible, so inflamed.  I am also bumped up to 60 mg of prednisone (from 40, ugh) and I think that at this point that and my diet are the only things keeping me going.
 
Octobergirl, how are you feeling?

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 2/11/2010 2:00 PM (GMT -7)   
Hmm, for some reason I am not getting my e-mail notifications, but I'm glad I checked on this anyways.

Iram- First of all, congrats on your new baby! I'm so sorry to hear you're having troubles though and have to wait until March to figure out what to do. I hope you find something soon to put you in remission so you can enjoy time with your new baby.

Grandpa- That's great advice, and I'm the worst at not living in the moment. I'm always worried about the future and wondering if I would have done something differently in the past if things would be different now. But you're right, I need to focus on now, or else I'm going to miss my life. It is a good mindset to keep, for everyone really (even those without chronic diseases), because we never know if we even have tomorrow.

Wednesday- I just responded to your other post about the Remicade not working. I'm really sorry you have to go through that! I'm scared that is going to happen to me in the near future. I don't remember the exact websites that I found about Humira working when Remicade doesn't, but I'll do another search for it and see if I can get the links. But what I read was really positive, and many people said they felt Humira worked better for them than Remicade. I know every case is different, but hopefully the Humira works really well for you. When do you start it? Sorry you have to go up on the pred too, ugh!

Thankfully I am feeling much better for now. I got my infusion 3 weeks early and it kicked in about 3 days later. Now I just have to see if it will last the whole 6 weeks. But I can tell already the Remicade isn't working as well as it did when I first started it. I'm not sure if I'll have to go up to the double dose soon, but we'll see. Thanks for asking. :)
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